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Good support site. I care for my mom who is almost 106 years old. I finally got additional respite hours and that makes a "world" of difference. Mom has MEDICARE and Medicaid. She is on hospice and has been for years. I have been her advocate for everything. So again, additional respite hours for yourself will definitely help.
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Every time I read responses to similar questions I get amazed by how many of us are living different shades and versions of the same story.
And I can't help but wonder what do we end up becoming after such deeply traumatic experiences?
At the end, or maybe before the end, what happens to people like us? Do we barely survive and live whatever life we have left with a heavy baggage that no one that's not gone through this can understand and therefore we end up feeling isolated forever? or have we abused so much our minds and body that we do not even survive for long?
Are we still functioning human beings after this is what I wonder.
And then maybe history repeats itself as someone else is burdened with having to care for us!
How to break this cycle is what I don't understand. The only lifesaver is better planning for the future. I'm sure most of our loved ones did not want this life for us, nor for them; did not want to be the reason for our unhappiness. And I'm sure most of us did never imagine resenting our loved ones for, in a way, stealing our lives from us.
I feel that when we think about these general and fundamental truths we realize life isn't meant to be like this, yet it seems to be the only way for us. But it is worth it to take an step back and look at the situation again, trying to find a different angle, and maybe and just maybe we may find a little window for a change and normality that starts breaking this cycle!
Sorry to not exactly have responded to the question but reading all our answers I realized there is a great illogical side to the way we are living what to us seems to be our only path! Hence, worth to take a deep breath, close our eyes and look at the situation again with a fresh set of eyes. We might find a little light that helps us brighten up our way!
May God bless us all!!
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WOW! I'm glad I came about this question. When I started taking care of her about 19 years ago, it was solely for Dr. appts. and prescription management. Then about 6 years after that she started to show signs of dementia, but being in her 80s I thought it was just her age. In the meantime my family moved into her house as immediate housing solution because where we were living went up for sale. But the need to be there became evident after hospitalization for a heart attack. It was easy at first, she could still be left alone and we can carry on our jobs and social life as normal. But soon, she set the toaster oven on fire, burnt pans, forgot to turn off stove, etc. We can no longer go out as a family, someone always had to stay behind. Everyone of us were willing to help, but within 3 years we had an empty nest. Now we had to plan ahead for any time out, even grocery runs. Still the kids would stop by and pitch in. For about two years, my daughter would arrive in the morning for about an hour so my husband could go to work and then take off when I arrived home. Oh, I changed my schedule to over nights so that someone would always be home with her. And also we had to "Mom proof" the entire house. We had to put everything away in cabinets with locks even the hand soap because she would put in her hair. If she could reach it she would touch it or take it. I had to take everything out of her drawers and lock her closet or she would take everything out in piles or clothes inside of clothes, inside of more clothes. So anytime we even want to wash our hands we have to unlock a cabinet to get the soap and hand towel. This is a pretty long answer already so all I'm going to say is it goes on and on the things we have to do--locks, baby gates etc has definitely taken a toll on all of us. The simplest tasks are now a big deal because everything is locked up. And she wanders so we have to lock doors, garage, outside gate. these last 9 years have been the hardest. Our family has sacrificed time together as well as our marriage being compromised. My husband cares for her as much as me so I'm very grateful to him. If I even go outside to do a load of laundry, before I come back in shes into something. I might have left my cup of coffee on the counter and such. It may sound like I'm whining and selfish but its getting almost unbearable to do this much longer. We are in our late 50's and healthy right now, but time is passing us up and all I feel I'm doing is cleaning up after her toileting mishaps. So at this point, to answer your question, we are coping but absolutely miserable and getting resentments. her finances don't allow us to have her in memory care. We have had help twice for family celebrations but a simple night out was $25/hr.
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I take online classes in my downtime. I find projects or things to do which take my mind off the situation. I have a camera on her and can watch my mother over my cell phone as well as communicate its two-way audio. I can watch her while out doing errands. Just think outside the box and remember at the end of the day you made the choice, no one is forcing me to take care of my aging mother at home. So I own my decision and don't whine about it. Sure frustration, alienated, feeling alone at times, if I entertain it.
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Brian, I admire your answer and yes your mother is so lucky to have you. I just hope that I can do half as well as you. My mom does tell me she couldn't make it without me and that makes me feel better but i am getting resentful and angry that my life has turned into this. I moved here to help her not to totally take over the care of her. Siblings where are you????? Just one day a week is all I ask...
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I try to stay positive and realize that my mom wont live much longer. It does upset me that the other siblings don't help. I have almost lost my job because of no help.
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I'd do fine if my husband would let me sleep. He has dementia and is an insomniac and has been for 63 years -- since he was 17. If I had a tear-drop in my garage, I'd get a night nurse a couple of nights a week to come deal with him while I sleep where there is peace and quiet for 8 hrs. Now, I'm lucky to get 4 continuous or contiguous hours. I go to bed religiously at 10 pm. At 11 he starts yelling -- literally. He will call my name and when I go into our master bedroom, where he is sleeping, he might say, "Hi." Sometimes I'll ask what he needs and he'll say, "I don't know." He can barely walk, but regularly comes into to my room at 4 a.m. to tell me I've had enough sleep, he wants to get up now. He seems not to be able to discern daytime from night. HELP!!! I adore him. I enjoy him during the day.
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Stressed out. I know I fight scarey feelings , overwhelming feelings of entrapment on a daily basis. No you are not alone. One thing I've been doing recently helps. As soon as my negative thoughts starts. I tell myself to stop. And immediately think of a good thing. Like a beach. Something positive and calm. It works for a while.
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Thank you for understanding JessieBelle and Erinm60.I sometimes have a scared feeling inside. But knowing that your all there helps.
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Ditto Jessie Belle and Stressed out.
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The feeling of emptiness and boredom is awful. Many of us are right there with you, stressedout.
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Hi everyone I'm just here to vent today that I'm very alone in my life and I just take care of my mom and don't have much of life no love no relation with someone I feel very lonely and empty inside.😢. So sad
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I cared for my wife for 12 plus years with Alzheimer's. the last six years were the most demanding as she didn't recognize me as me. We seemed to be always waiting for me. I sit here now being so glad that I put my desires on hold to care for her. It such a great feeling knowing that I have run the race and I can continue running without looking back thinking of what else I could have done for her. I thank God daily for His guideance and assistance.
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I have begun to try to see the spiritual side of caring for another and trying to see my mother as a soul that will soon be flying free. I am trying to lift myself back up to the spiritual person I used to be. The everyday drudgery of picking up toilet paper, washing all the clothes, cleaning house, doing yard work, and doing my own job kind of chases that ole beyond-this thinking out of me. Seeing the spiritual would raise us up out of the daily misery if we can do it.
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I like to play guided meditations, and good music, warm bathe,create art, stretching, practice being of service to the loved one...thank thenm for the part they have served in our lives, give lovingly, practice compassion, watch their breathe, and breathe with them, practice good nutrition, take walks. get a good coloring book and colored pencils. make the best of each moment. Feel good about yourself.
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"Super Dog". My dogs super dog. I swear if I hear it one more time. Every night we walk the dogs. Every night we see pretty much the same people walking thier dogs. I imagine these people are getting tired of hearing how smart "Super Dog" is. It's the little things that bother me the most. The repitition. I asked her 2 nights ago. Can we change it to "Smart Dog". ? She didn't understand. So , Super Dog ,again tonight
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Oktobar, I know it is very hard caring for someone with pick dementia. My greatest concern is for you. Your mother could live many more years, and unless she is wealthy, you will be lost in poverty for your golden years. You are wonderful to want to help your mother, but you can help her without sacrificing your own life. There are other options so that you can help her and also take care of your own life and needs.
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I just cry sometimes i quit working i care about my 60 year old mother i am 32years old.All my friends are married,nobody understand you i cry sometimes for 3 min. problem with pick dementia i have no idea how long she will live there is no time frame.But i was thinking let's say that i got sick my mother would probably take care of me that's 100%.So i would feel remorse for rest of my life if i would not take care of her.
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Thank you. He has come back some but each recovery is just a slight step down. It is a long, hard journey but we are taking it one day at a time.
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Sending you and your family love and prayers Jazzy.
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It's all about your frame of mind. If this a decision that "YOU" made. own it. Think outside the box. I bought a Tend Camera from Walmart. I can see her in real time on my cell phone as well as two-way audio. I don't have to enter her room 50 times a day to check her. we can also talk thru the camera. Even at 2 am I can peek at her. I am now less tired. I set 7 pm as our mother/daughter time. Like a visit. I set an alarm to ring every hour in her room. This has her check herself for wetness. If she can feed herself, she can check her pull up. This saves me time. She has hand disinfectant by her bed. Rarely does she use toilet paper. We use baby wipes. Keeps her bottom area clean at all times. I made a telephone list. She is to call 3 people a day. This cuts down me being her only entertainment. I have a magic jack so she has her own telephone and number. Many times family members get tired of being "yelled at" because of their lack of assistance, let them call loved one directly. Be prepared how often that will (not) ring. She has a whistle to blow if I am working in the yard. or she can call me on my cell which I put on vibrate. Once a week I run errands and have someone sit with her. I love me and I own my decision. This is my 8th year. I am 58 years young. Worked all my life. I do it all. It's easy to complain when you see the other loved ones living life and if you miss it, then stop missing it. You are the writer of your bio. If a spouse is pressuring you, leave. When people say it's not that simple.... it really is...
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I think of it as a spiritual journey, to be of service to someone who needs my care. Always remember to find and create time for you and things you enjoy. Exercise, nutrition, and rest..you need these. Journaling is very helpful. Hobbies, crafts, music, art, can you enjoy any of these while being with your patient? Be they good or bad, your emotions are coming from your thoughts...can you change your thoughts? Can you turn resentment into joy? Can you give that joy to your loved one? If not, get someone to replace you, you need a break, and your loved one probably does too. xo
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Hi all,
Well, I am coping by having signed up for culinary school and am busy with cooking! So I focus on the doing and the cleaning up
and serving my son! (Sometimes he doesn't eat what I cook so pizza wins out! But that's young adults for you!) However, some days it's not all a bed of roses- but I thought it would be helpful to others to throw out this idea or even some other hobby helps. I also find animals help too, horses and dogs.
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Jazzy2,

I am glad to hear your husband is up & about! Your love & caring has made a difference, know that.

Others may offer advice on our loved ones care; telling us to relinquish our role or consider placing. Maybe even giving us sadder news. Those others, even though their intents may be good, are not in our shoes. Making tough decisions are personal ones. We know our loved ones & ourselves.

As caregivers we may harp on all the doom & gloom we face, yukky stuff we hate, behavior challenges 24/7, but we don't give ourselves credit, pats on our backs.

Often I question why I took this role on, "What was I thinking," I ask? I question choices & decisions. Yet I know I've made a difference for my brother in this fight with ALZ.

Caregivers your love & caring makes a difference, but, all you do matters all the time.

Blessings 🌸
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Update. My husband woke me at 4am Friday and said he had cancelled his trip because he decided not to go. He has been getting up, walking around, and eating healthy meals ever since. Go figure! What a strange journey we are on.
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its hard its very hard somedays just to get out of bed but i know i need to because im all they have.my 64 yr old dad is on hospice at home and i help my mom who has bad COPD ,other health problems, take care of my dad..he is getting worse everyday. his mom passed away yesterday morning and it has made his health go down even more..he wont eat and either he cant sleep or wont sleep because he is so sad then he just passes out from being tired.i hate not being able to make him feel better.i do alot for them because i love them and want to help.they keep saying we are sorry for asking so much of you..its breaking my heart
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Jazzy2,

Sorry. Reminisce your wonderful memories during this sad time. Your love & commitment, along with prayers & faith, will get you thru. Blessings
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So sorry
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I think the time is close. The nurse this morning said the heartbeat was faint. He's been in bed all day, no food. I did bring him a protein shake. He took a couple of sips. I, too, play music all day. And cry.
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Some days are stressful, I adopted three baby rabbits as pets, and I find that caring for them is work but it comforts me and makes me more compassionate. And I also take a few hours per day for myself like four hours. I sometimes treat myself to sinful foods like chocolate cakes and I find people I confide in and talk about anything with. One good friend is good enough but if I find more persons I feel better. It is usually stressful I feel body aches all over at times. And I feel to run away at other times. But good sense always prevail and I have a long bath or cry or eat more of my favourite stuff and go sleep four hours. Then begin the house cleaning, cooking, pay bills, care him, feed him bathe him etc. I listen to the radio all day and it helps greatly. Mello FM Jamaica plays great songs from the past and have interesting programmes. It helps me cope a lot.
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