Is or has anyone dealt with being a caregiver?

It is great to hear similar stories to what I am going through and to know that there is hope. My mother is 55 and was just diagnosed with a form of dementia, but has been showing signs for years. For a while it has just been me and her, and no one else sees all of the changes that I am able to see throughout the day. It is very heart breaking and I can't seem to stop thinking about her all day long. It is like she is falling apart right in front of me and there is nothing I can do about it. One of my fears (thinking about the future) is will I be able to take care of her? (I am pretty much alone in this) and does this mean I will pretty much let myself and my life go? My mom has sacrificed so much of herself for me, and I want to do the same for her but I do not know if I am strong enough. Sometimes I want to stay away from the house all day, but I know she needs me to look after her. Right now she has some difficulty walking and very poor memory and it makes me want to cry all day. One of her biggest fears in life was that she would end up in a nursing home. I also fear that I will be the one to find her passed away and I read so many stories about the family member becoming mean. So far my mom is completely the opposite, but she has always been a very pleasant person. I am hoping that this does not change. MFP has been good for me because it allows me to concentrate on something other than my mom's health. It kind of clears my head in a way because I have something else to focus on.

I'm the peanut butter AND the jelly in the sandwitch generaltion. I live in Denver with my 16 year old daughter and doors down from my 22 year old daughter who has a 4 month old baby who I hang with a lot when I'm not working my 50 to 60 hours a week. And I have a foot in Tucson where my elderly parents are declining quickly. Believe me, I get it. Being a caregiver takes a lot of energy, I'm heading south again tomorrow.

I am not sure if I would qualify as a caregiver but I was my mom's hospice nurse for the 10 days she had left on this Earth. She had a stroke in January, 2008. It was sudden and unexpected as she was in her early 70's and fairly healthy. I had just started nursing school at 45 years old, I was raising 3 kids on my own, and still working. For the few weeks she went back and forth on the health scale I went back and forth 4 hours away every weekend to see her after school was done. Finally, the docs said she wouldn't recover from her last stroke and wasn't going to regain consciousness. With my 6 siblings, we prayerfully decided to bring her home and let her die in her own bed. That was in her advanced directive and over the years my mom made me swear to her she would never die in a nursing home. As the medical one in the family, she knew I would understand. We made arrangements for all the medical supplies we would need and she came home. I arranged a leave from school for a semester (I was in an accelerated LPN 15 month program and semesters were only 5 weeks so I knew I wouldn't miss much school) and I traveled east to bring Mom home for her final journey to be with our Lord and my dad, her husband of 48 years before he passed 7 years before. Within 1 day we knew that sadly her area hospice was a joke and there would be no relief so it was all on me. I took that on willingly. It was my final gift to her. She was there with me when I was born, and I would be there with her when she died. Over the course of 10 days, and I know 10 days isn't alot for some caregivers who do this for years, for me 10 days was a lifetime. The stress my family put me under was incredible. They stood around watching me change her sheets, change her diapers, bathe her, change her, fix her hair, suction her when she needed it, move her position in the bed every 2 hours to prevent bed sores, etc. Every one of my 5 sisters stood back and watched but never offered to help but they all offered their opinions on how I could be doing better. I had been an EMT for 20 years, was a CNA and currently in nursing school. I was very confident in my skills and know my mother was as comfortable as the situation could be. My brother, yes my 1 poor brother, was a blessing as he wrangled my sisters out of the room when he noticed how anxious I was getting when someone said something stupid. One sister actually told me she was going to sleep in the room with mom one night (I slept in her room at the foot of her bed every night) to make sure I was doing a good job. I lost it, started crying and begged my brother to either hire another nurse or remove my sister. He removed my sister and took care to make sure it didn't happen again. I got one hour a day when my Aunt would come over and sit with mom while I went and walked for that hour. That was it, nothing else. i don't regret my choice and would do it again. To me it was a beautiful memory I will cherish forever doing that for my beloved mother. Every day my family would ask was today the day mom would die. Every day I would say no not today. Finally, on 2/12/08 in the wee hours of the morning I got Mom settled and I laid down. I felt Mom's door open and I thought it was my aunt coming in to check on mom as she did every night.. I closed my eyes and didn't think anything of it until a minute later I heard a voice I hadn't heard in 7 years. It was dad's voice saying, "Anne, it's time. I am waiting, please come to me." I turned around and my aunt was sound asleep on the living room couch and had been for hours. I knew the door was shut when I laid down but now it was open. I went into my mom's closet and cried. I was sleep deprived I told myself, I was crazy, I was hearing voices, it wasn't my dad. But something inside kept on saying, yes it was him. I started looking around in the closet and saw 7 picture boxes stacked up with all our names on it. I looked in mine and saw 45 years worth of memories in that box. Baby pictures, report cards, mothers day cards I had given her over the years, other precious mementos that she had taken the time to sort out for all her children. I cried so hard looking at those memories and thanked my mother for being so thoughtful. I went back into the bedroom and heard my mom moaning quietly. She didn't seem to be in pain but for the whole time since she had her stroke she hadn't made any sound. After some reflection, I think she heard my dad too and was trying to communicate with him. This happened at 2 am and the next morning when my family asked me if Mom would die today, I said yes. That night, at 11:11, my mother went to be with the love of her life, my Dad, in heaven and to finally meet Jesus. I believe Dad came to get her and show her the way home. I will go to my grave believing that happened What brings me comfort to this day was I was there when my dad came to visit, when my mom left to be with him and the fact that she died only a day before Valentine's Day and my parents were together again for the first time in 7 years on Valentine's Day. I went on to finish nursing school with honors as that was my mothers dream for me and I knew she was there with me in spirit. My health took a turn for the worse that same year and my lupus went into a flare and I spent the next 4 years being so sick and in and out hospitals, surgeries, etc. I fought with depression with my Mom passing as sadly her sister and her mother, my grandma all died within 5 weeks. And in November of 2009 we lost mom's other two sisters. All 4 sisters and grandma died in one year. My weight grew to the biggest in my life. Finally last June I took control and started walking. I have walked off over 80 pounds and now am running, biking, swimming, and will do my first 5k Saturday. I am competing in a mini triathlon in April. It's called the Angel's Race. I will be running for my mother. She was my angel on earth when she was alive, and now she is in my angel in Heaven. I will run in her honor and not a day goes by that I don't miss her. My journey was only 10 days but it was a good insight to what caregivers have to do on a daily basis. IT is the hardest job out there.

OK I probably rambled on forever. If you are still reading thank you so much and God bless. Good luck wherever you are in your fitness journey. If anyone wants to add me, I log on daily, am active with my friends statuses, and try to help out when I can. Xo Veronica

i used to be an elder caregiver professionally. trust me, you get just as attached: your patients become your family. especially if you live-in. i also cared for my daddy through his terminal cancer, until his death, while i was raising a toddler son and a daughter in kindergarten. and i was the sibling "on the ground" for my mom's heart attack and death. i was the girl that started babysitting at 9, and never stopped. now the shoe's on the other foot. a year and a half ago, at age 45, i suffered a ruptured brain aneurysm, then a stroke when the docs tried to stop the bleeding in my brain. i was given less than 1% chance of survival. being a stubborn ***** worked in my favor in this situation, however, and i did survive, thrive even. i'm the doctors walking, talking miracle. but that doesn't erase the fact that now i have a traumatic brain injury and all that comes with it. that now i'm disabled. that my beautiful 24 year old daughter is my caregiver.

Glad I found this board.

@LeanoraRose, thank you for the advice. I do fear that I am going to lose myself sometimes (in many ways). I am so concerned about my mom that I am starting to worry less about my appearance and simply focus on her. I also find that on days that are more stressful I have a hard time controlling what I eat or I will completely lose my appetite. Similar to your dad, my mom also falls and has been falling for years. It is like she just loses her balance and falls over. She is also stubborn and will not let me help her on days that she has difficulty walking. Because of this she really strains her legs and has to get fluid drained from them. Sometimes I fear that she is so stubborn that something horrible will happen to her and accelerate her illness.

@LeanoraRose I am glad that you are taking time out for yourself now and are sharing your story. It helps me to remember to continue to care for myself as well and gives me hope that everything will work out. I know that it is important to take care of myself if I am going to help someone else.

I'm so sorry to hear about your story hun. I can relate a bit.

My mom is dying of cancer. She was diagnosed 8 months ago. Since then., we've been through hell. Operations and radiations have left her a mere shadow of who she used to be. Thankfully, I have a brother and sister. My parents divorced and my father lives far away. So does our family. We cook for her every day. Clean, do the laundry, the garden, ironing, groceries, keep her administration; everything. We even unbotton her pants when she goes to the toilet.

I understand how it is and how hard it is to make time for yourself. I've learned this weekend that she is dying and there is no cure anymore. Its going to be a long, hard road, but you need to take time for you. All you need is an hour a day. Wheter you spend it on a long run or a hot bath; you can't take care of someone else if you don't take care of you first!

Although each of our experiences being caregivers are unique, they all share the same thread of being able to reach inside to grasp the fence to rise above and do things for loved ones that you had never thought you could even do.

My grandfather passed about 6 years ago, he had dementia and went downhill quicker than we expected. Mainly it happened because my grandmother, being the wondrous stubborn woman she was, didn't let on how much he had declined to the outside world. My grandparents raised me, so when Pap took a turn for the worst at the ripe age of 22 I quit my job, took one with a 12 hour shift rotation to ensure I would be home with them 4 days a week. I abandoned my boyfriend at the time and just dropped life for a while. My mother, Nana, and I were the caregivers. Hospice was a blessing and we appreciated every minute of time they were there to help us and show us what to do or how to do better for him. Neither of my grandparents ever wanted to enter a home, so we opted to do it ourselves. What an undertaking that truly is! I don't think anyone that has not been through it can actually relate to getting through each day watching someone you love deteriorate, or fathom the duties that loved ones must take on to keep them at home. He became bedridden rather quickly and his mind was going, which was the hardest thing. I'm the last person that he seemed to recognize, and when even that faded it was even harder on all of us. Other family members stopped visiting when it got bad, not offering any assistance for what I consider (and still consider) selfish reasons, "I don't want to see Dad that way, I don't want to remember him like that." I still remember when my Uncle said that, I'm still bitter. As if anyone wants to watch someone they love die, but because you love them it's what you do to make their last time on this earth as comfortable as possible. While I can't relate to the time frame that you dropped your life, I only had to do this for 6 months not years. I don't regret it, not one minute because I know I was where I was supposed to be. I will say that time passed has given me better perspective on everything that happened then and what the three of us went through being his caregivers. I am still bitter about certain aspects, mainly other family members that refused to help, or stopped by for what hospice called "morbid curiosity," and those that felt the need to patronize my actions. Some of the feelings will never go away, and that is good and bad. I will always know that I can care completely for someone that is incapable of doing that for themselves, and that is comforting. I still miss him every day, that never really changes - it just doesn't feel as painful as time passes. I have not let go of my bitterness, I'm told that sometimes people hold on to extreme emotions like that so that you still feel something about your loved one's passing.
I also have another perspective now, my Nana passed this past September. She chose the day before their anniversary to die, I still think she did it on purpose. She passed so quickly that we were all left in shock. The weekend prior she had bowled one of the best games of her life, that Friday she was helping me pack up my 2nd story apartment to move into a house I had just bought the week prior. Saturday she spent the day out shopping with my Mom, and that night she was admitted to the ER. The doctors thought she only required her gallbladder to be removed (a major surgery for an 85 year old, but she was so active we just figured she'd bounce back). She seemed worse and worse from Sunday to Monday, we were still thinking it was a gallbladder issue. Tuesday after a CT scan the doctor announced that she was going to die, the results were so far from healthy and normal it was scary. I was at work and got the news when I went to the hospital after, Mom had stayed with her the whole time. The diagnosis was insane, her stomach had distended into her chest cavity, moved her lungs aside and was filling them with fluid. I didn't leave again, and she didn't make it to see the dawn on Tuesday.

Being a caregiver of someone that is sick gives you time to prepare for their inevitable parting from this earth, but we don't always get that cherished time. People have asked me which way is "better." Honestly, neither are better, the shock of losing someone that you thought was healthy is just as devastating as caring for someone that no longer recognizes you. It's devastating in different ways but the end result is overwhelming grief. I guess what I'm getting at with this silly long post, is that you should be thankful for whatever time you get with your loved ones, take pride in the strength that you possess, and keep your head up because the pain will subside eventually. Don't feel bad for letting yourself go or dropping your life, that's what a compassionate person does. Dieting can fix whatever you have gained, but not being there for your loved one you can never take back. We all make our choices, some more important than others, and some with more dire consequences but letting yourself go is reversible, and I wish you the best of luck in finding what you're now seeking Lenora - you will find it.

I sold my home and moved to Florida to be near my Dad, as he was in his 80's and living alone. After several months I moved into my own condo as he was very independent. In 1999 he suffered a stroke that left him unable to swallow without aspirating food. I moved him in with me and continued to work part time. He recovered fully and was able to eat again. Then in 2001 he had surgery for a melanoma on his head. Then he had several falls which eventually had him hospitalized. While in the hospital he was never gotten out of bed, developed bed sores and was sent to a nursing home. I felt guilty not keeping him at home, but he was wheelchair bound and it was physically impossible. Eventually Hospice was called in as he was diagnosed with bone cancer. The Hospice nurses convinced me that I had to take care of myself. When he passed away, I wasn't there. I felt so guilty for a long time.
Eventually I forgave myself. Long story short: when you do the best you can for your loved one, and they are safe and well cared for, that's all that matters. Take time for yourself.

I am a caregiver for my disabled daughter, which has led to a sedentary lifestyle. My regular exercise is laps around Walmart. I hate what I have turned into. I used to work 12 hour nursing shifts in critical care, or 8 hour shifts in nursing homes. While working, I averaged a probably walked no less than 5 miles a day, 5 days a week. The lack of exercise, and weight gain has made my breathing worse.

God bless you! But do try to get some help. So you can do a few things for yourself!

*raises hand* Yes, I can definitely relate...I am currently caring for both my daughter (who I am basically home-schooling now due to medical issues) and being a support for my mom was recently diagnosed with cancer. It can be very stressful and can really take a toll on your health. There were some moments I honestly felt I was on the verge of a breakdown. It took me a long while to get back into a somewhat healthier routine in terms of diet, exercise, etc. It's easy for everyone around you to tell you that you need to take care of yourself, but it's not so easy to do, esp. when you feel pulled in every direction with little help. I totally get it. :flowerforyou: