What about when you get to the stage that nothing is enjoyable but laying in bed? :/ I have made the most safe spot possible at this point, and I feel selfish cuz 20 min a day isn’t helping… I love my mom but I just wish I could have 1 day of pressure free .. living. Once she got out of the hospital early this year I am obsessive about her well being… my birth dad, her son, didn’t give her her meds for weeks and he knew it. I was out of state, I had no idea until I got home, he also manipulated 20,000 from her- but idk what I can do about that 😭 I just don’t want her to have seizures again or stokes, or worse…
At the same time I know he isn’t in her life now bc he got what he wanted. So I know other caregivers i could hire? Would ensure she gets her med.. but I just can’t stop freaking out 24/7 about her health.
but I’m so so tired .. & I feel so selfish.
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Candace Rotolo i have been following your post from two days. It seems that all the time i read your post i always receives new thing from your post.
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It's a load of wishful thinking for most caregivers. That's the whole point.

It's not practical and it won't happen for the vast majority of caregivers, no matter how well meaning the author may have been in her intentions. All it does is point out how limited most of us are in resources, be it time, finances or energy. Most of us are simply dealing with the lmits as best as we can. We already know what we need, but the resources simply aren't there, so what do we do? I don't think that people who are truly in the trenches would just walk away for the sake of self.
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Thank you Candace, for bringing us the wisdom and opinions of Emma Dickison, whose personal caregiving experiences lead her to choose a career in that field.

The message you focussed on is absolutely vital to the health and sanity of caregivers: "carving out some time and space for yourself is not just something you should do; it's something you have to do."

I wish that was a message prospective caregivers took to heart before they began the journey. I wish that when they were estimating what the expenses would be, they factored in the cost of respite care. I wish no one took for granted that some family member would volunteer to relieve them from time to time. I wish we didn't all assume we could be SuperBeing, and work tirelessly, endlessly, without a break (all in the name of Love). Alas. Few of us go into this experience well-prepared for what to expect.

And once we are in the trenches, we hear the messages over and over, "arrange respite," "carve out some me time," "take regular breaks," And that seems so very, very hard to arrange that we feel overwhelmed, and hammered upon, and made to feel inadequate for yet one more task we can't seem to master. Hence anybody preaching about the need for respite is likely to stir up strong reactions.

While I understand the eye-rolling reaction to decorative pillows and scented candles, I think that claiming a little territory in the caregiving site it a splendid idea. I hadn't thought of it that way, but one of the things I mourned when my husband got sick is the loss of my own space. As we put up grab bars and removed furniture and made wheelchair paths and threw out decorative rugs, I remember thinking, "I didn't realize that in order to keep my husband out of a care center I would have to live in one!" My home office (where I work fulltime) became my refuge. And I have pretty scatter rugs and NO grab bars. :-D. In here I listen to the music I like, at a volume that doesn't shake the walls.

I've long believed that respite time is absolutely essential to effective caregiving. I hadn't thought about it, but now agree that some kind of personal space is essential, too.

Your message is a good one, Candace, and it is delivered well. Thank you.

(And if this article inspires just one caregiver to persist in carving out some me time and space, I hope you will consider it worth the hissing and booing it also inspired.)
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I just typed a comment and had to leave because my Mother interrupted me, again. This happens a lot. Back to the subject at hand...I get up at 5:30AM to have 'me' time. Luckily, she sleeps late. This is my gardening and personal time. It's a couple of hours. I consider myself lucky. I can handle her shenanigans much better if I have just a little time to myself. I love her like there's no tomorrow, but, ya know, you have to take a little breather now and again to keep your sanity and be happy.
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I consider myself very lucky. I get up very early. Luckily,Mom is a late sleeper. During this time, I do my gardening and other personal things that make me happy. When she wakes up I'm a little more prepared for any "slings and arrows" coming my way. I hope others can find even half an hour for a quick walk around the block, or reading an article. It helps me a lot to be able to do this.
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EVERYONE needs to vent, Paka, and calling the author out on her inexperience was my way of venting. Sorry if THAT upset you. If you knew what I was dealing with, the daily mania of caring for BOTH my parents with NO family support, not even a f*ing phone call, you wouldn't think I was a hurtful person, I'm sure.
Have a positive day.

-SS
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Thanks for your comment, Cricket. I appreciate the care that you put into your response and the caring and sharing attitude that it reveals. I happen to agree with every word of your last paragraph, especially the reasons you give for our being in this forum. I'm not really finding that here, but it is why I came.

I'm not going to detail the harshness of my situation or the sacrifices that I have had to make to be a caregiver. This is the internet. Exposing too much personal information is not always a good idea. It also shouldn't be necessary on a site intended for support to have to prove yourself as a suffering caregiver in order to receive support. Having to justify a harmless attempt to brighten a fairly grim life just doesn't seem very supportive.

Indeed this thread has distressed and depressed me. I am on respite right now--a whole week to be in my own home in my own city with my doctors--and thinking about the responses on this thread has eaten away at my rest and my ability to focus. It's so negative that it's damaging.

Someone told me a long time ago that "This life is hard, but it's harder when you're stupid." I took that to heart, and have often, when my life has seemed hard, looked around to figure out what I am doing that is stupid. To my amazement, I have often found it. Then I corrected it and made things much easier for myself.

I think I know what I have done that is stupid this time around, and I think it's time to correct it. I have learned some good things on this site, but I really don't need to be around hurtful people. I have enough of that in real life.

I wish you success in your peacemaking and healing efforts, Cricket. Candace, I think I'm gonna put some of those lavender sheets in my closet, too. :) Mayasbop and Selfishsiblings, so sorry to upset you by sharing a positive in my life, but, since I'm not going to share the negatives, I won't bother you any more.
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It's equally sad is when both the loved one and the caregiver have to make the choice for a NH because they physically, mentally or emotionally cannot continue to care for their loved one. I know caregivers who had to put their loved one in NH because they were no longer able to properly care for them and who have even put nanny cams in the rooms to make sure that there was no neglect. Another caregiver that I know had to put her own Mother in one of those wheelchairs all tied into it because if she wasn't she would try to get up and fall and break her hip or worse like she had previously done and in her situation she was already wearing a back brace with severe back pain and just couldn't lift her Mother anymore without putting herself in the hospital which would leave her Mother with no care at all. Another one goes and visits her Mother almost everyday at the NH and takes her out in her wheelchair for walks to get her out in the sun and fresh air, eats with her while feeding her and afterwards when she leaves she cries because her heart is broken to see her Mother like that and know that she just can't do it anymore. And another caregiver who has tried to take her own life because she became so depressed as a result of pushing herself beyond her limits caring for her Mother instead of considering a NH because she would feel so guilty every time she thought of it. These caregivers deserve not to be judged either because they too are being loyal and doing all that they are able to do for their loved ones and they shouldn't be made to feel guilty because they are no longer able to do it all. In their minds they felt they didn't have a choice either.

The important thing for all of us to consider is that each one of us is doing all that we can for our loved ones. We are all good people with our own talents and limitations. Some of us are stronger and some of us are weaker but we all love our parents. We all make our choices whether we feel we have choices or not. It's extremely difficult and their is no right or wrong. What might be wrong for one person is the right decision for another. What is really important for us to remember here is that we have gathered here on this forum to share our experiences, to vent, to seek help and understanding, to seek others who can support us without judgement. We are all equally human and deserve love and understanding.
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The author is right that we all need respite - somehow - for our sanity....Do you know when was the last time I slept in my bedroom??? Last year August - when my older sister visited from Colorado. She spent 1 whole month here and I sure took advantage of it. I didn't cook, clean and I slept wonderfully on my bed in my bedroom. (I sleep in the livingroom with my parents since mom needs constant suctioning throughout the night.)

But...you guys are also right that it is impossible to have respite. She said even 10 minutes will help...10 minutes is NOT enough. When one is exhausted, 10 minutes is Nothing. I do have my own space in the livingroom/dining room. I have situated the lazy chair as far as possible from my main source of stress - my dad. I have put the hospital table between us to block his view from me. When I have no desire to answer him, I just sit there and ignore him. He'll raise his bed, sit up and I will just look at him and not respond. And while he's sitting up staring at me, he gets angry because I won't respond. I give him the silent treatment because otherwise, we will end up with a yelling match. I'm just too exhausted to argue with him...I can't go to another room because mom needs constant suctioning...so I'm stuck in the livingroom.

From what I've read so far, Cricket and Mayasbop each have their valid points. If I could afford putting at least one parent into NH, I would have jumped at it and send my father there. Unfortunately, we don't have the money for it. So, I make do...with lots of anger, resentment and frustration...If I didn't have my oldest sis helping me from Mon-Fri 8am-6pm, I would have Mayasbop's attitude. You're both right but from different circumstances.

I have a goal to go off-island next year for 2 weeks. I'm still brainstorming on how to do it. Who in my family is willing to move in and change both parents pampers, feed them, suction, clean the trach, etc....??? I'm thinking of saving up money and then offer to pay them $500 to babysit parents while I'm gone. My boss offered to pay for my ticket since next year I will be 20 years working there. It's his bonus to me. Gosh! I don't want to waste that bonus. I will need some $$ from that pot of gold to come up with sufficient $$ as incentive for fam to watch. It's 1:14am. Time to sleep since I will be getting up at 6am to start my day. Later!
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I am going away for a long weekend for the first time in 16 mos nx wkend. The cost of home care, airfare and spending money (luckily I'll be at my boyfriend's so no hotel) will cost about the amount you can put down on a house. This is the MAIN reason respite is used from rarely to very seldom.
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It's not the article so much as it is the condescending attitude of those responders who use the writer's words to validate much of what they do. They seem to believe that they have all the answers and they don't.

There's a big difference in being in the trenches with your elder and simply babysitting an elder while they decline. I'm fighting for my mother and I will do so as long as she wants to fight to live, period. It's all about what she wants, not what some stranger thinks is appropriate.

My mother hasn't given up on living, so why should I give up on her needs and put mine first?
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Mayasbop - I feel your angry. It's ok. We are with you on this journey.
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You speak of having choices, but at what cost to an elder whose only crime is that they grew old and needed help? I'm sorry, but no. There simply is no choice as far as I am concerned. I made a promise to my mother and I will keep it. She's depending on my being adult enough to do what I said I would.

And no, it's not guilt that motivates me to do for my mother, it's nothing short of love. The amazing part of it is what I have gained in the process, the things that I consider to be priceless. I will always carry the memories of these days with me. I have her love, her trust and her confidence in my care and those are worth the sleeping in naps that I must do to get through the days right now. I don't consider it too much to ask of me.

What makes it frustrating is not my mother or her conditions, it's the being told that I'm not doing things the right way if I'm putting her needs first right now. It's also the doctors who have to be reminded that she's an adult woman, not a child to be talked over, when we go to her appointments. It's the nurses in the doctors' offices that scream at her as if she's deaf, an assumption that they make simply because she's an elder. It's the assumptions by at least one of her children that she's past her usefulness and should just shut up and go into a nursing home to die.

My mother is not the first one I've cared for. I've cared for people of all ages. The man in the picture was my grandfather whose caregiving I did. I would do it all over again, just as I would my mother's --- she's got her father's eyes as I get reminded of daily when I look into them as I care for her.

Her life has already been narrowed because of her health. At one time, my mother traveled the world for the government. Now her world is her bedroom and her computer. I won't narrow it further by taking what control she does have away by sticking her into an institutionalized setting where she's treated like a child.

My grandaunt was in one of those places and when I went to see her, it broke my heart to see her beg to be released from the chair she was firmly strapped into because it was simply more convenient for the aides. I knew if I did, I wouldn't be allowed back to see her again.

And I can doggone guarantee that I won't do that to my own. If the Lord takes me a day later, that's what will be. I'll have done what I was supposed to do.
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MMM throw pillowssss...
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Mayasbob, I am truly touched by your experience. You have my empathy, you are definitely in the trenches. I too have been there in caregiving. When I was taking care of my MIL her needs were so great that even with hospice care I still only got 2 hrs of uninterrupted sleep a night and for a long period of time. I did what I felt needed to be done up until the day she died. Within an hour of her death the family was standing over me because I literally fainted from exhaustion. Afterwards, It took me a full year to normalize my eating and sleeping patterns and I developed a whole set of health problems of my own. Then not long after a year from the MIL we had to bring the FIL to live with us and I started over again on the next parent, I did the best I could with him until he passed. Now I'm on my Father. With my MIL no one in the family was willing or able to care for her and they all told her she needed to go into a NH for care, she called me up crying on the day we were moving into our new home and asked me to come help her so she could die in peace at home. I didn't have the heart to tell her no and I loved her, so I unpacked my box of clothes, packed a suitcase and headed to the airport. Yes I made the sacrifice, in all honesty I was a martyr for her because it's what it took to get the job done. I learned from the experience and it helped me to grow as a person and I felt that I did the right thing then. I could go on and on about each experience and the long or short lists for each one so you know that I really do know what you are going through, but to me the important part of each experience besides how they were cared for is that each time I learned something more about myself as a human being. Somewhere along the way I learned how to make the "me time" for my own well being. I had to learn to fight for myself and my right to be happy while also being a caregiver. It was the hardest thing I've ever had to do, even harder than caregiving itself. While that was my experience it doesn't mean that it should be yours or anyone elses.

Everyone of us has our own experiences with caregiving and it truly is a journey. As to at what point we make a shift in the boundary between caring for others and our own self care it is a very personal matter that each one of us has to make for ourselves. No one has the right to judge from the outside looking in. Whether we are doing to much and hurting ourselves in the process or not doing enough, it is our own personal experience and we each have to go through it and make our own choices. What we can do is share our experiences with each other to help each other on this journey. Some of us continue to martyr ourselves and others of us put the loved one in a NH, and some of us learn to find a way to do it and care for ourselves also in the process. In any of the situations it isn't right or wrong. We are all equally doing the best we can in the way we chose to do so. The important thing to remember is that there is a choice, we chose how much of ourselves we give away or keep, if we can remember this then we can hold on to ourselves while giving so much. By this recognition we take responsibility for our choice instead of being a victim. By recognizing we have a choice it empowers us to improve our own quality of life by making more choices for ourselves and our loved ones regardless of keeping them in our care or seeing that they are cared for in a NH.
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Maybe I should post the short list of my mother's conditions along with the open abdominal incision that has yet to close nearly a year after it was made. The one thing that my mother still has is a working mind, but her physical problems require 24/7 care and I do it all myself. A nurse comes to take vitals and do a dressing change twice a week. Otherwise, the care is ALL ON ME. And it's all on me no matter what. I'm the only one who does what she needs. And I do it even when I'm sick or injured. There is no one else willing to step up to the plate.

Let's see... Diabetes, congestive heart failure, abdominal abscesses from wire mesh used to reinforce her abdomen after cancer surgery, a heart attack, a periocardial effusion, lymphedema, pulmonary hypertension, regular hypertension, depression, severe sleep apnea, thyroid problems, insomnia --- that's the short list. And I do my best to manage all the numbers and all the conditions that the numbers concern on a daily basis.

So, tell me how much "me time" I should manage to squeeze in. Or how I should make my mother "move over" for me and my wants because my comfort is so freaking important, so she has to give up her stuff for me. Tell me how to basically push her and her needs aside.
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Nice work if you can get it....
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Actually, I've been there and done that--days of anger, frustration, bitterness, exhaustion, pain. Taking care of someone with dementia is not for sissies. It's also not for dummies, and I am very much on the side of "work smarter, not harder." It's taken me three years of full time living with my mother to make the progress I have (and I am still not finished), but these three years follow on a life time of dealing with a handicapped parent who has some some real personality issues. Believe me: Mama didn't develop dementia and suddenly become a nicer person.

What I found through a lifetime of experience is that I am the adult in this relationship, which means that I need to make adult decisions, not only about mama's care but also about my ability to be there for her until the end. I can't do that if I neglect my own mental and physical health. I have also found that it's not all about me--nor is it all about her. Every day is a struggle to find the balance between my needs and hers. She will always "win" when it comes to physical care, but I will eat my lunch first so that my low glucose level doesn't make me meaner than a junkyard dog. There's a lot of trial and error in this, but "The Thirty-Six Hour Day" has been useful in speeding up the learning process. I have also learned that there are no bonus points for being a martyr. I get no credit for suffering and sacrifice. What I do get credit for is making proactive decisions to make my life and mama's better through organization and constant learning. It doesn't hurt if things also smell nice or that I found a cheerful table cloth. But, no, I still don't like those throw pillows.
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I've been my mother's caregiver for seventeen years. As her health has gone down, time for me has gone down as well. No siblings who are willing to help and 24/7 care take up the majority of my energy. Stress levels are such that I'm in the middle of a psoriatic flare.

I'm glad that others can have so-called "me time". As things continue to go downhill, there won't be any time for it. It will take every ounce of energy you have to just get up and start another day.

You'll find out. We all do.
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I thought that the main points in this article were presented in a very positive way. While the pillows and comforters might not particularly appeal or seem realistic for everyone the point is what is important...."we need to give attention to our own personal needs and desires". I am taking care of my Father and I'm in the fifth year now since I moved him in with me. Before him I was a caregiver to both of my husbands parents until they died so I think it is safe for me to say that I do qualify to speak as a caregiver and sadly the one thing that I see people giving in to, surrendering to, is their own personal needs and love for themselves, myself included. We just lose balance between those we care for and ourselves because we really do care about them and what they are going through, in our minds their needs seem urgent and ours don't. I know that Caregiving is the most difficult experience we've ever gone through (for the majority of us) but even so I think we have a tendency to lose ourselves in the process. We usually do this for many different reasons, for some it's because of just not knowing how to ask for help, for others we don't have anyone willing to help because we've asked and asked only to be told NO or ignored, and then their are those of us who just feel like we should suck it up and do everything ourselves. Whatever the reasons, we find ourselves feeling totally overwhelmed, angry, bitter, resentful, frustrated, or just plain exhausted.

Many times the demands of caregiving are so great that it's all we can do to feed and bathe ourselves and get a little housework done if there's any energy left. Lets face it being a full time caregiver is TOUGH and most of us are doing far more than we are capable of doing because we don't feel like we have any other choice but remember many times it's the depression and negative thinking that creeps in on us that can destroy any thoughts to caring for ourselves. If we find ourselves in the "black hole" we need to admit to ourselves that somewhere we got off track in our own self care and take responsibility for our misstep and seek to find ways to include taking care of ourselves.. I think it doesn't matter if we use pretty pillows or a quiet corner in a room all to ourselves or even use our bed pillow to beat the bed with when we feel like we just can't take it anymore, the point is we need to DO SOMETHING positive for ourselves, it's part of self preservation. Honestly even the smallest, inexpensive things we do can help us survive and hold on to ourselves in spite of caregiving. Today for me it was picking a Magnolia flower off the tree as I was going from the car to the house. Just taking a few seconds to pick the flower, smell it, and put it in a glass bowl to float in some water, then putting it in my kitchen window seal to enjoy for another day reminded me that I am alive, and that I matter too. I don't have any siblings to help me but I do manage to have a little "me time" everyday even if it means that I have to say NO to one of my Fathers demands or make him wait a few minutes extra before I give him his meal, meds, etc. I make the "me time" a priority everyday. By doing this consistently I have been able to get rid of the resentment, anger, frustrations that I used to be extremely overwhelmed with. Now even though their are all the same demands being made of me I am caring for my Father and I'm a much happier healthier person. Thanks for listening to what I've said and I hope that my comments are helpful for some of you.
*´¨)
¸.•´¸.•*´¨) ¸.•*¨)
(¸.•´ (¸.•` ¤ Chirp Chirp Cricket Hugsღ
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Candace, I'd end up with a comment longer than your essay to tell you how I've worked--over three years!--to get time for myself and the space to relax. Rather than do that, let me just say that both are essential for caregiving, both for one's mental health but also for one's physical health.

In my situation, progress has been slow and not without conflict. Mama, after all, has spent a lifetime (mine) trying to control me and make me be the little robot she can approve of. As committed as I am to seeing her through this time of her life, I am not any more willing today to destroy my own sense of self than I was 40 years or more ago.

While I very much respect her need for a safe and familiar environment, I also have to be able to take care of her efficiently and live in the same house with her. I have cleaned out closets and cabinets and rearranged things so that we have more food storage (and less decorative glasses), actual closet space for my clothes (and some really nice donations of mama's unworn clothes to fire victims and Good Will). My masterpiece is the conversion of my late father's hobby room into my own hobby room, but the den is also coming along nicely as a true family room where my husband and I can also feel comfortable. For the den, that means less bric-a-brac, better seating, and (if I can manage it) almost any other color than orange.

How does mama feel about this? Pretty good actually. The transition times were stressful because she couldn't imagine the end product or that there would ever be an end to the transition. Once a transition is complete, she's quite happy. I am, however, only working in areas that are not essential to her own identity. No changes in the "public" areas of the house, such as the living room, minimal changes in her bedroom for her care, continuing respect for her need to present herself and her home in a particular way.

Impractical? Essential! I don't like candles, but I love the smell of lavender. I have some lavender-scented dryer sheets in my clothes drawers now, and get a hint of springtime when I open them. Mama needs lots of little pillows to get comfortable on the couch, but they just annoy me when I have to sit where they are. My "decoration for me" is more in the line of pictures of beloved members of my husband's family (Mama is well stocked with pictures from my side of the family) stuck in my dresser mirror and the recent introduction of a new plastic tablecloth in the breakfast room featuring the color blue. My next goal is a chair that neither numbs my posterior nor dislocates select portions of my spine.

As for help, it's a real problem, but I have learned to ask. The worst that can happen is that I get a "no." I have also hired an out-of-work neighbor to help me with the heavy labors of managing (and reorganizing) the house as well as the occasional stint at mama-sitting. My husband steps in when I have to come back home (in another city) to see my doctors. I no longer feel guilty asking someone to come sit with mama while I get a haircut. I was several weeks overdue for the last haircut, but I just kept asking until someone felt guilty about saying no.

After all this effort, however, I can't really say that there is a "happy place" for me in my mama's home--180 miles away from my own home and husband--or true respite. All I've managed to do is create temporary and minimal "fixes" for stress and loneliness and boredom. As essential and helpful as they are, they do not replace closer families, more involved communities, and a safety net with fewer holes. Until that happens, maybe I will put some of those lavender dryer sheets in the linen closet . . .
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Couldn't agree with SelfishSiblings more and I don't even have siblings but I've seen firsthand one cousin doing EVERYTHING while the her sister was just too busy (Course she wasn't too busy when her parents were well enough to pay for vacations for her etc). And FRIENDS -- honey they disappear yours AND the person you're caring for. My mom has one friend she can count on -- and you know why that friend is so reliable -- because mom PAYS her to help out. The other friends have pulled Houdini acts and thinnk they've resolved themeslves b/c they appear for quick bday and X-mas. My friends, honey I am an island to myself. Who wants to make plans 2 wks in advance with anyone just to see a movie??? Fortunately I do love my mom and have a good relationship with her.
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Not everyone has the luxury of friends and family to help. Many of us are ALONE in this. Not everyone has a good relationship with the people they are caring for making it equally hard to do the job.
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