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Hi everyone, never thought I'd find myself at a site for caregivers, never thought I would need to. I thought I could stay strong forever, but lately my life has hit the floor. What life? That's really the question, I don't feel I have a life any longer. All my waking moments, day and night are for my mom. I'm desperate, I don't know who to talk to,,,I go to the caregivers meetings once a month, but they give you suggestions, tell you to take time for your self, do yoga, exercise, yeah right,,,and when do I do that,,,? before or after my moms yelling for me...I've always been dominated by her, at 66, I still am...Never thought my retirement years would be sitting at home 24-7, but here I am. Purchased a nice looking car last year, why, it sits in my driveway because I have no one to care for my mom so I can go...I quit my full time job 2 years ago because it seems like everyone I try to hire to help me with her either doesn't show up, or 10 different people come at 10 different times, or they steal!..
I should not even hit the send button, I should just get off of this site and sit in my room and cry like every other day. I'm sorry if I've wasted anyones time on here..

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Hi everyone, you all are truly kind..It hasn't always felt this way, I want to see if I can copy and paste an article I wrote for our local newspaper...I was a photographer there and one day something amazing happened to me and I wanted to share it with the world..I think you all will enjoy it. Like I said, I haven't always felt this isolated and empty, there were times that I enjoyed my mom. I hope this article won't be too long to post here, if so, I'm sure someone will boot me off. (smile). Here it goes:

Saturday, September 3, 2011

LIVE ‘ONE DAY at a TIME’ ( a caregiver’s story)

“One day at a time” is an old gospel song that reminds us that we should be thankful for each and every day we have on this good Earth.
However, most of us do not. Instead, we spend our waking hours rushing through the day worrying about what we will do tomorrow, next week, or even next year. We tend to forget that, as one of the lyrics implies, “tomorrow may never be mine.” This is more reason why we should stop, take a deep breath and enjoy what God is giving us right now, today.
I learned this valuable lesson these past few months and I learned the hard way.
I am a caregiver. My mother suffered a stroke seven years ago, and I’ve been taking care of her since that time. I watched her go from a person who crocheted everything in sight, talked a blue streak, to a woman who now sits in a chair unable to use her hands for crocheting and unable to speak at all. It has been a hard road for us, but in the last few years, she has learned to use her left hand, not for crocheting, but for crossword puzzles , and still unable to talk, we now communicate in our own special way.
My faith was tested June 2 of this year. My mother, up until this time, has been happy, content and living her life “one day at a time”.
She awoke at the usual time, had her breakfast and was ready for her daily routine of working on her puzzles and listening to the TV. This day started the same as any other, but it didn’t remain that way for long.
During late morning, she generally takes a short nap, then right back to tackle another puzzle. When I noticed she was sleeping a little longer than usual, I started to worry. I shook her and called out her name several times, but she didn’t respond. I panicked and called an ambulance. I couldn’t figure out what could happen within two hours. I didn’t know what was wrong.
In the hospital, they examined her, did blood work and the waiting started. I sat there beside her bed wondering just what went wrong. The doctor finally came to the room, and what she was about to tell me dropped me to my knees. They said my mother was in complete renal failure, and she had three weeks to live. I was devastated. All I could say over and over is how in the world do you go from an everyday morning routine to laying in a hospital bed with three weeks to live. I just didn’t understand that and I couldn’t accept it. I spent the next few days, and nights, at my mom’s bedside and prayed.
I knew my mom didn’t want connected to machines, and you know that in your heart, but until you are faced with that decision, only you know how lonely and afraid you feel, wanting desperately to make the “right “decision. And then the decision came to me in a way I never ever would have expected.
People who know me personally know that I am a photographer at heart. My all-time dream is to photograph a bear in the wild. I have spent countless hours, driving around, looking for that “one perfect shot”, but with no luck. They say God works in mysterious ways-yes, indeed he does.
After talking with the doctors again, they needed me to make a decision to put her on dialysis or to just put her in a nursing home and spend the last few weeks waiting. I struggled, knowing in my heart I owed it to her to not put her on machines, and knowing that I had to keep my promise to her to never put her in a nursing home. But I wasn’t prepared to make that decision today, not after sitting there with her at the breakfast table, laughing and talking about what the day’s weather would be like. I just wasn’t ready.
I went to the chapel in the hospital and prayed harder than I had ever prayed in my life. I asked God to help me make the right decision and have the strength to do what I knew my mother wanted.
I ran home to get a change of clothes and to struggle with myself on doing the right thing. I cried as I drove home, but what I was about to witness was something that would make my decision for me. I prayed and prayed to God to give me a sign, just something to show me that my decision of not putting her on dialysis and not putting her in a home, that bringing her back home with me was the best thing I could do for her. Driving home seemed to take forever: I wanted to get back to the hospital as quickly as I could.
As I turned the corner, I started up a little hill and saw something starting to come out of the woods. I thought possibly a dog or a deer. But it wasn’t either of those; it was a big black bear. I stopped the car right in the middle of the road and watched in disbelief. The bear slowly walked into the middle of the road, stopped, lifted his head up, looked straight at me and then turned right around and walked back into the woods just as slowly as he walked out. I just sat there staring and started sobbing. I folded my arms over the steering wheel, laid my head down and thanked the lord. There was my “sign”.
I felt such a wave of relief come over me. I had no doubt that the Lord heard my crying and praying and answered my prayers. I knew from that moment on I was going to go back to the hospital, tell the doctors I was taking my mom home with me and whatever will be, will be.
I knew from then on we would both have to live “one day at a time” My mother, within a few days, was well enough to make the trip back home.
It is now three months later and my mom is back to getting up, having her breakfast, and doing her crossword puzzles. Everyone says that maybe it wasn’t her time, but you know what, maybe God was telling me, it wasn’t mine. Maybe he knew I just wasn’t ready to let her go yet.
“One Day at a Time” takes on a whole new meaning for me now, and I hope that whoever reads my story really takes it to heart and remembers that each day is more precious than the one before…………. We aren’t promised tomorrow.

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hi
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Hi darlene123 I know its very stressful at times and we feel like there is no hope and we are overwhelm with guilt,anxiety, frustration, sadness, people and doctors have recommended Yoga to me also. I say to myself they have got to be kidding When?? They tell you to take time for your self but going for a walk or meeting a friend or even just sitting in a coffee shop helps break some of the routine it won't cure these feelings for good but it helps the only way out is respite care and you and I need to do that more often. Stay strong my friend! xo
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We made my mom index cards that say things like "I need to go to the bathroom" "I'm in pain" and "please call my daughter" with my cell phone number. Most of the time, staff is able to anticipate her needs. I,my sisters in law and brothers are good at our jobs, but believe me, we'd make lousy caregivers. However, we are spectacular advocates!
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Darlene, thanks for telling your story. It's very timely for me. I'm days away from putting mom in a memory care place and am resolved to do just that. I moved mom in with me about 1-1/2 years ago and things have not gone smoothly. I turn 60 next week. My coworkers and I were finally let go from our transcription jobs. Mom's elder care attorney told me we could set up a contract for me to get paid to continue to care for mom but I now see the folly of that. I just can't do this anymore. The minute I lost my job, I put in for an STNA position nearby and heard back the next day. It's not something I especially want to do but I'll be able to pay my mortgage, clock in and out and with mom out of here, I will be able to sleep and try to get some of my life back again. My brother and sister are disappointed but have no clue what it's been like holed up in my own home and mom no longer willing or able to get out with me unless it's to see what few relatives we have, and I can see they are glad to see us go when we do visit. Nobody comes to see us in my home. Mom now babbles constantly, day and night. She is now up in the middle of the night and just told me for the tenth time to "get out of my house." It's a madhouse here but will end soon, thank God. I feel for you and hope you take the good advice of others here.
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Darlene, my mother also has aphasia (from a stroke) and was greatly helped by speech therapy. Did your mom have rehab after a stroke or is her aphasia from something else?

My mom has been in a NH since shortly after rehab. She is able to make her needs and wants known to staff in part because they have so much professional experience dealing with aphasia. They are also able to keep her physically healthy.

Stress comes from feeling like you don't have a choice. If you want to care for her at home that's great, set up respite care with an agency so you can get out for a few hours at a time to see a movie, have lunch with a friend or just take a walk. Let us know how it's going!
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darlene, I'm 62 and I never thought my golden years would be spent like this, either. My mother loves TV and the volume would probably register on the Richter scale. When I talk to her I have to yell it three times. She has dementia, so a lot of times now she gives me a confused look, instead of an answer. I feel bad for her and I feel bad for me, too. It is so hard to live this life. I've been at it for 5 years this week and don't see the light at the end of the tunnel yet. I also want to keep my mother at home until I can no longer manage her care. I'm pretty tough, so know I can do it. I just wish it could be easier and more joyful.

With the trouble I have communicating with my mother, I imagined what it would be like if she had aphasia. The picture board sounded like a wonderful idea. I wonder how hard it would be to make one. If it just had the most common things she could point out, that would be so handy if it worked.

Many of us caregivers talk about putting on helmets so we can bang our heads on the wall without serious injury. I know with the communication problems, you probably feel like getting a helmet, too. Many times we seem irreverent here, but it helps to relieve the frustration. And occasionally someone comes up with some good ideas.

Welcome to the group! I have a feeling you will feel right at home here.
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The dog is drinking? Well, I would be too. Two years ago tomorrow, my sister dropped dead. She was 5 days short of being 70. She could have written your letter. And Mother? Oh, she is in the nursing home, 95 years old and having the time of her life. I tried to tell my sister "Do not go over there, every day. Do not answer the phone 10 times a day. Do not let her run your life." But, she was just never able to say "No," to mother.

Figure out what happens if your mom outlives you and make that happen now. She has you over a barrel. Good luck. I wish my sister would have listened.
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i totally agree with pam . stress kills . you must find a way to reduce the stress on yourself . other good AC articles explain how you have to take care of yourself in order to help someone else . putting your own needs up there on the priority list isnt selfish at all when seen in that light .
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youll get two different kinds of advice here . some will tell you to have your mom placed somewhere and some have caregiven in the home for parents until the parent passed away . neither group is right or wrong . my mother wanted to stay in her home and we managed to do that right thru to death by end stage dementia .
my 90 yr old aunt has gone from IL to NH and i believe shes better off in NH . they take great physical care of her and she isnt as lonely . the years you spend with your mom you will never get back , its indeed a sacrifice of your own free will .
i think the bottom line is; what does your mother want to do and are you able and willing to accommodate her wishes . in home or in NH you are still a caregiver and your mothers lifeline . in either situation i hope you can find the support and hired relief that you need . your mothers primary doc will remain the most powerful figure in the equation as long as your mom is alive . i think you should communicate your needs with the doc . doc can point you towards any resources that are available to you .
i nearly lost my marbles many times caring for my bipolar and demented mother in her home but now that shes gone i kinda miss having someone to do things for . caregiving can be h*ll on earth and one of your greatest accomplishments at the same time but theres one thing we can all agree with ; your life is figuratively on blocks and its really hard on your brain .
the best piece of advice i ever received was from an article on this site . i believe it was written by carol . the title eludes me but the gist of it was ; there IS such a thing as just doing your best . guilt eats caregiver alive . its an incredibly tough job and you need to forget about perfection . you just do your best , the circumstances and outcome are beyond your control .
the more you read about elder care , dementia , and end of life , the more you can understand your position of caregiver and advocate . when you can visualize yourself as a hired caregiver and detach from the mother / daughter mindset you might be able to approach the gig with considerably more calm .
reading helped me immensely . there were fewer surprises , i knew what to expect near the end .
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Darlene, keep looking for respite support from carers who specialise in dementia care. Some of them are just astonishing in the way they anticipate need and communicate with people who can't even give a (misleading!) signal - I think of them as horse whisperers for elders.

I sympathise with you about not wanting to hear that your mother is pulling a fast one on you, it isn't fair to you, you're being exploited etc etc etc. I'm not saying that none of it is true, mind. But whether or not it's acceptable to hear depends on who it's coming from, and whether that person fully comprehends how you personally do see your mother's welfare as a priority. I have just had a deeply bruising experience of someone else taking care of my mother, which I won't go into here, but the fundamental problem is our diametrically opposed view of what constitutes good care. If that person were a professional, rather than a family member, I'd be reporting her. It's intolerable to see anyone maltreat the person you devote so much care to.

The much better news is that I have also found a simply fantastic facility that covers the range from independent living to full-on nursing and dementia care. They do exist. I can leave my mother there and breeze off for a week's sleep without a single anxious backward glance, because I know that they are if anything better at my job than I am.

You are bound to be anxious about your mother's being left in someone else's charge because of her idiosyncratic, shall we say, communication style. But "seek and ye will find." Maybe a way to start would be to have someone come in, say once a week, and shadow you; eventually that would at least give you some time to yourself - you could go for a drive! I'm sorry that you've had bad experiences, and I know how frustrating it feels during the phase when you're paying for a dog and barking yourself, so to speak; but the effort is worth it. You need time off or you will eventually break down.

Keep looking for respite care to get a proper break, too. We aim for one week every three months, which seems to sort me out. Broken sleep night after night won't ruin just your temper, and then you're looking at that really scary question: if something happens to you, what then happens to your mother?
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My mom had aphasia something like that too, just way off the mark though she could speak. We used facility care and had to make sure everyone understood she often said the opposite of what she actually wanted and would get SO mad when you did what she actually said instead. Speech therapy helped her a little - maybe with your mom you could get one to evaluate and maybe do a picture board so she could point to what she wanted. I know this sucks and it does not get better - at least get a little respite help so you can get a breath of fresh air every now and again. Is your mom mobile enough to bundle uo and get out of the house with you, just for a stroll around the block or a garden, even in a wheelchair? That was my sweetest memory in hospice, we got Mom out of bed and wheeled around their garden area and he actually liked it. Can she "help" fold towels or do an art activity of any sort or sort of be participating while you do it? I hope there is something to do to make both your lives a little better, to have a little enjoyment of anything at all.
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Keep up the therapy, sort it all out. Hopefully you will discover that it would be healthier for BOTH of you if she was living with other seniors in an appropriate facility. Stress kills, faster than old age kills. On the other hand, visiting her would remove her resentment for your care. It will remove that tightness in your chest and stiffness in your neck. Hope you sort that through.
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Darlene, you are already burnt out since you do spend time in your room crying. Would you be able to survive mentally and physically for another 5 or 10 years caring for your Mom? Stress can kill you or cause a serious illness. I give me a serious illness back in 2009 that I haven't been able to shake. The cause was stress related. I agree with about the pills, I won't take them either because for me the side effects were worse than the illness itself.

Please note that 1 out every 3 Caregivers dies leaving behind the loved on they are caring. Those that work in the continuous care facility are very familiar with stroke victims. Such facilities could even offer physical and speech therapy to help your Mom.
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Hi again, and once again sorry for the rambling and ranting...From the top 2 post, now I'm glad I hit the send button, (smile)
As for my mother going to a assisted living or for that matter a personal care home, for me that is out of the question..She cannot talk, therefore she would never be able to communicate with anyone there and to me that would make my sitting home enjoying my freedom unbearable..I couldn't do that to her..In the 10 years that I have been taking care of her, I can communicate with her just by signals not hand signals as used for the deaf, but just our own means of signals. Yet with the aphsia, or however you spell that, when she is meaning no or shaking her head no, she is actually meaning yes, and when she gets a word out like coffee, she will actually be wanting me to get her the tv remote. It's bizarre sometimes how I manage to figure out what she wants. One time she kept patting her leg and I went from wanting a dog to shaving her legs to her wanting to stand, only to find out she was wanting me to get her salt for her supper...I know, I know, it's unbelievable until you spend a day with me and see it for yourself. I always tell my kids to pick me at the game of charades, we would never lose.
As for going to therapy for myself, tried that to only find that they validate my therory of how dominating she is to me and sometimes downright mean, but then it only made me not want to take care of her anymore so I stopped before it got to that point...
I don't want to go on pills, I feel I have a built in defense mechanism where I just "don't think about it" and continue on day by day...I'll stay in touch with all you folks as days go by and see if this forum may turn out to be my 'LIFE LINE"
Thanks for listening..I really appreciate it.
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Please stay on this website! I'm glad that you hit the send button.

You have not wasted anyone's time here. We are here for each other.

It is terrible that your mother has dominated you your entire life. She sounds like she has a narcissistic personality which is a common thread here. You can go to the top right hand corner of this page and do a search about narcissistic parents and you will see that you are not alone.

You sound extremely depressed and that is understandable under your circumstances. I'm not sure that a caregivers support group can really help you with your history of being dominated and still being dominated by your mother. I think you need to see a therapist who really understands your plight and is trained to help you. They will probably recommend that you see a doctor who will likely prescribe and ainti-depressant.

Does your mother have the means to afford assisted living? Since she is living in your house, you do have some leverage there.

Did you hire caregivers through an agency or were they just free agents?

Love, prayer and hugs.

Keep coming back and let us know how you are doing.
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darlene123, I know what you mean when others tell you to do yoga, exercise, go to a movie, attend a college class... like who can concentrate on any of those outside activities when your brain is rapped around whomever you are caring.

Oh please stay on this website, you will find good suggestions and many *ah ha* moments. What would happen if something happens to you? What would your Mom do then? Probably would be placed in assistant living/nursing home, right? Would it be better for her go to there sooner than later? That way she can meet new friends, etc. And you can go back to your own life, yet be able to visit with your Mom on a regular basis.
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