TV blaring, dogs drinking, nerves shattered, help!


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.



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

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!

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.

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!

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.

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.

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 .

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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