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..
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.
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.
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.
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.
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?
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 .
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.
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.
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!
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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