Is or has anyone dealt with being a caregiver?

LeanoraRose

Before I started my true journey on MFP a little less than two months ago (I joined before with good intentions, but used it for maybe 3 days.) I didn't consider myself to be healthy, confident, motivated, or anything that I have been loving that I'm experiencing lately!

Before my journey here, I was the primary caregiver for my 86 year old grandfather. I cared for him for about 3 1/2 years. He actually passed away 8 months ago though. (The six months inbetween then and now I consider my adjustment/acceptance period.) People would tell me I was doing such an amazing thing. Friends, aquaintances, and my own family would say they were so proud of me, and that he must have been so thankful to have me. The majority of the comments were extremely supportive and encouraging. I was constantly told that I would always be so happy that we were able to spend so much time together. (And I am!) But despite the encouragement, and the friendly gestures of support, I was swimming in pity for myself.

I knew that I took on a challenge that was too much for me to handle, but I didn't feel there was any other option. He took care of my family and I for years, and was like a father to me growing up. I never thought twice about doing what he needed done. It was more of a reflex. I spent days and nights with extreme anxiety wondering what family member or stranger would try to take advantage of him, and how I could protect him, and myself from being accused of doing the same. I wondered if every decision I made was the best, and if I was giving him the best care I could. I felt guilty attempting to have a social life, and knowing that he was sitting at home blasting channel 7 news all by himself. I CERTAINLY didn't care about myself, my future, or my job. HE was my job.

I remember the first day after he "officially" HAD to move into a nursing home. All he told me was that he wanted to go home. I cried and cried that I knew it wasn't possible for me to take the best care of him anymore, and that there was no better option. I was so sad knowing that he would NEVER go "home" again. It was heart wrenching. I would look at his room in the house and cry just knowing that he would never live in that room again.

The first day (and most days after) he was in the nursing facility, he gave the nurses a run for their money. They called me to let me know that he was not adjusting well. As I took the phone call one of my bosses saw me and asked another peson if I was talking to them about anything work related. That person said no, so the boss asked another boss who asked another boss, and before I knew it I had to explain myself to about five different people. It was so upsetting.

Choking down tears was a regular challenge for me at that point in time, so any other stressor added felt like my world was crumbling. My co-workers knew that I took care of my Grandfather, but I don't think they knew the exact toll that it took on me emotionally. I tried my hardest to keep it out of workplace, but failed SO miserably.

I was pretty much a **** employee. I spent so much time obsessing over appointments with lawyers, doctors, social workers, and therapists that all my mind seemed to be in was "plan for Grandpa" mode. I never cared for a minute about my job as much as I did about him, and it showed. My main goal was to make sure everything was in place to make his exit from Earth be as smooth of a transition as possible. I focused on it at home, at work, and while I was with him. I don't think I thought about much else. I worried that he would die in front of me, or that I would find him dead when I was with him. And when I wasn't, I worried that his nurses would purposefully not take good care of him because he was so difficult and angry at the world. He suffered from dementia and was MEAN! He was NOT thankful that I took care of him. He was angry that MORE people from our family didn't care about him. He was paranoid, and blamed me for anything that didn't go his way. I knew he was ill, and didn't know better, but it hurt SO badly to know that he had NO IDEA how much I loved him. I still struggle with that today.

Over that time period, I blew up to around 200lbs. I'm sure at some points I was heavier, and other times lighter. I attempted to not lose focus of myself, but I couldn't even keep my head from spinning, let alone manage a workout regimine and finish a bachelors. I DID manage to finish an associate's degree, but I was ashamed that it took me as long as it did, so I never really shared my excitement to even have completed THAT much.

When my Grandfather DID finally pass away, it happened to be the same weekend my family was going to be re-united with my adopted sister for the first time. I remember how embarassed I was to meet my beautiful sister from L.A. while I was so heavy, and feeling ugly, and sad. I also remember trying on outfits for his ceremonies wishing I didn't have to see family that I hadn't seen in years looking the way I did. I hated how low I felt. I busted my *kitten* taking care of Gramps for so long, for the finale of his life to be a big sad reality check for myself. At that point, I started to shift my focus back to myself for the first time since I was 20.

For those 6 months inbetween his funeral, and my journey here, my boyfriend and I bought our first home together, an adorable dog named Zoey, and I have been learning how to be a caregiver for myself. I have lost about 18 lbs in the past 8 weeks, and I feel like the stronger I have been getting physically, the stronger I have been becoming emotionally as well. I am starting to set small goals for myself again, and I hope they keep me on a path where I find myself stronger than ever, feeling like the person I've wanted to feel like for SO long!

If anyone else can relate to being a caregiver, and is trying to find balance between their own health and another's, I would LOVE to hear your story!

wikitbikit

It is wonderful to read that you're starting to bloom! I guess in a sense you can think of some of your caregiving experiences as your 'fertilizer'-- It was kind of warm and comforting, and at the same time it kinda stunk, but in the long run it has helped you grow and become more strong. :flowerforyou:

My father was diagnosed with a form of dementia about 6-7 years ago. Just before the effects of it started to get really bad and noticeable to people outside the family (he could perform if he had to before then), I got divorced. My mom and I decided to combine households so that she could help me care for my (now 11 YO) daughter, and so that I could help her care for my dad. Because there are two of us it's much easier to bear, but it's still insanely difficult to watch someone you love deteriorate in front of your eyes. There are definitely times that I want to get away, or wish I wasn't living with my parents (almost 40 and living with my parents! Ah! That was definitely not my plan!), but it just wouldn't be the right thing to do.

The form of dementia he has also involves Parkinson's, so as we go further down the line the amount of care he's going to need is going to grow exponentially. Between my mom and I, we should be able to handle it without a nursing home, but it will definitely be a challenge.

GleeDee00

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.

LeanoraRose

It definitely was difficult to watch! And my Grandfather had Parkinson's with his also. He started falling a lot. It got to the point that it happened so much, that I stopped venting about it to people. I figured they heard about it enough. One fall would turn into days at the hospital. As his dementia got worse, he would refuse paramedic treatment, and scream at me for calling 911. I knew he didn't know any better though. I tried to laugh about as much as I could, but it was just to deflect the reality of the nightmare. He was so stubborn he eventually fell and broke his hip bc he refused to ask for help getting to the bathroom. That was his ultimate downfall. He only lived a few months after his surgery.

The whole experience was very challenging, but I feel like I now owe it to myself to be the person I know I am and have always been.

Would you say your health has taken backseat also?

LeanoraRose

GleeDee, just make sure you do lots of homework on facilities in case you ever DO have to make the horrific decision to put her In a home. Medicare.gov has very thorough ratings of nursing facilities. In my area, they wouldn't take you if you didn't have $200, 000 in assets either.
I never thought my Grandfather would go into a home, but when he couldn't get up on his own anymore, there was no way I could go to work, and leave him alone.

I constantly worried about him. Once you are forced to take things away from the person, is when they get angry. I had to take knobs off of our stove and lock our basement door so he wouldn't burn the house down or fall down the stairs. He thought I was hiding his things in the locked basement and tried breaking into it for hours until he succeeded and broke the door knob. He also figured out how to use the stove without handles. He thought I was just picking on him and that he was fine.

It was very emotionally draining. If I could recommend anything to any caregiver, I would say to take time to yourself. Pay for a day of respite care, and do something to treat yourself so you aren't worrying while you are out that something is happening that you should be home for.

erinpd

I feel like I could have written your post. My grandpa died almost two years ago, and like you, he was pretty much my father figure growing up. He, my grandma, and my aunt raised me and my brother after our mom died. So, I wasn't the primary caregiver, exactly, but I often had to take on the role my mom would have had if she were still alive. I wasn't ready for anything like that, and it really took a toll.

Not only that, but about two weeks after his funeral, I started grad school and began what I consider the worst two years of my life. His slow decline and death was only the beginning. I'm just now getting my life on track again. It's a slow process, and there's a lot of guilt on my part for moving away from my family.

Anyway, friend request sent....

janbez

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.

LeanoraRose

I love hearing from other people that can relate. Do any of you make time for yourselves healthwise, or are you similar to me in the way of losing sight of yourselves? I found when the weather was nice in my area, that I enjoyed packing up my Grandpa's wheelchair in my trunk and taking him for walks on nature trails by my house. I got SOME excercise in that way, AND he really enjoyed getting out!

I do regret not taking care of myself better though, and wish I had done more to get moving back then! Live and learn though! I am making sure I don't ever make the mistake of putting my well being last ever again! I sure hope I can inspire others like me to make sure not to do that either!

VeeBethTris

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

upgetupgetup

This thread tears my heart out.

LeanoraRose, I'm so glad you have your life back. What you did was important.

We have to do better than this.

watcherII

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.

wikitbikit

Oh man, Leanora, your Grandpa sounds just like my dad! Did he have Lewy Body dementia as well? We try to laugh too, because sometimes it's just such a silly illness... Years ago, before I moved in with them, my dad one night collected a whole bunch of clothing out of my mom's dresser and brought it all to her, asking if they could go to the Salvation Army to donate it because '[he didn't] need it anymore.' Sometimes he tries to shave with toothpaste. One night, he woke up in the middle of the night and peed in the cat's litter box.

But then he also suffers from hallucinations, and he often thinks there are people in the house who aren't there, and oftentimes they're threatening or scary. He also forgets that this is our house--he's always asking if he can go home. Sometimes he comments on how much this place looks like our house, how it has the same furniture and so on, but he is adamant that he is not 'home.' He'll get up in the middle of the night and sort of sleepwalk around the house ALL. NIGHT. LONG., sometimes zeroing in on something and trying to take it apart (a lamp, a chair, anything).

He's a lot like a little kid with a very rich imagination, sometimes, I guess you could say. Only he's like 6' and 185 pounds. He gets mean and cranky and sulky--but to be fair, he was never really a bundle of joy--but fortunately he's never (or not yet) used his size to make trouble (I'm 5'5, my mom is probably 5'3).

I think because it's my mom and me--and my daughter--we don't lose sight of our own health as much as you did. We're all here as reminders to one another that we need to be taken care of too, and we're all here to kind of take turns keeping watch over my dad (well, not so much my daughter, but she can serve as something of a 'lookout' to make sure my dad doesn't leave the house if, say, I'm in the shower and Mom's on the treadmill in the basement). I am currently otherwise unemployed right now, so I'm actually using this time as an opportunity to get myself into better shape... I did a lot of damage to my health while married.

GleeDee00

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.

EvgeniZyntx

I am currently providing hospice care to my mother along with my brothers and father. As the oldest son, with some medical related training many of the drug-related question are brought to me for balance. We started morphine this evening, something my father resisted until today. So much I could say, so little of it makes sense today.

Yes, taking care of myself is a bit on hold. If I can take care of my daughters and family for the day I'm doing ok.

I really don't think I have ever met a couple that love each other like my parents do, and it's devastating.
I don't ever want to leave the choice to someone else to take care of me at the end of my life.

Morphine is a strange blue.

This place keeps me sort of sane.

zealousmissjj_wechange

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!

Sarauk2sf

I looked after my mother for about six months while she was terminally ill, about two months of which was full time when I took time off work towards the end. I was the only person she trusted to administer her meds, especially when her cancer metastasised (sp?) to her brain. I was also one of the few people who was strong enough to help her move or re-position her. It was exhausting, both mentally and physically, but I absolutely never resented it and will always be grateful that she trusted me and I could help.

I believe that I came out of it stronger, knowing that I could/would put everything to one side for someone I loved. (I don't have kids so having someone dependent on me was a new experience). I also came out of it with some horrible memories but also some extremely good ones that give me peace about her passing, at least more than I would have done had I not had the opportunity to help.

Sorry, I am not being very articulate with what I am trying to express.

MinaValkyrie

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.

jlapey

My Mother came to live with me Thanksgiving day in 2011. She lived in my guestroom until January of 2012 (too short) when she suffered a major stroke two days after my grandson was born. Needless to say my joy at being a first time grandmother was well overshadowed. She spent several months in a rehabilitation clinic where I visited her EVERY SINGLE DAY. It was so hard to see her like that. She couldn't speak, could barely comprehend, had no use of her right limbs and was fed through a peg tube. It really took a toll on my life. Eventually, after much crying, deliberation and advice from physical therapists, nurses, doctors and family members I succumbed to putting her in a nursing home, wheel-chair bound and barely able to speak. Honestly, there was no way I could have cared for her properly in my home with or without my job. That was difficult to accept and now over a year later, I still feel a pang of guilt. It's was only just recently (two months maybe) that I reduced my visiting from EVERY day to every OTHER Day. The time it takes from your life and the stress of finances and legalities can be overwhelming. But like you said, when someone devotes so much of their life to care for you, you have to care for them when they are in need. Today, she is still alive, still wheelchair bound, but at least now she can eat on her own, understand when you speak to her and can even talk when she really wants to and tries. She seems very happy there, has made lots of friends with both the residents and the staff. She is well liked, despite her not talking. She enjoyed the activities and merely watching the others. I imagine she would have been quite bored at home with me. Or at least that what I tell myself when the guilt starts to bubble up again.

dotcale

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.

LJCannon

You did an AMAZING Job for your Grandpa and even though he couldn't express it due to his Disease, I am sure that he Truly Appreciated you and Loved you being 'There' for him.
Congratulations on all the Positive Changes you are making!
:flowerforyou: You are Fabulous!!

lindagroves50

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.

joymiko

Never feel guilty! Your mom would not want you to stop your life! You can do what you can do and that is it!

joymiko

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

rowlandsw

Dementia never makes it easy on a caregiver and you have to remember that they're just angry for numerous reasons and it's rarely anything you did. We saw this when my grandma put her mom in the nursing home and we dealt with it from 2005-2008 when we had to put my grandma into assisted living. She got to be so difficult at times and then suddenly got docile as she slowly remembered less and less but she'd have never once accused my dad of not doing his best while dealing with all the crap between fighting the VA and paying her bills and taking her to the doctor. I swear those 3 years aged him 10.
You made the best choices you could to take care of him and nobody would hold it against you.

kbtommi

*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:

Candi_land

When I was 23, my grandfather was diagnosed with Stage 4 pancreatic cancer and given 8 months to live. My grandmother had advanced heart failure and end stage kidney disease and was unable to care for him by herself. My grandfather was this strong, hardworking man..we had been preparing ourselves for years that my grandmother would be the first to go, and to find out he was sick was not only heartbreaking but shocking to say the least. At the time I was living in New York City, engaged to be married, and working a very demanding job in finance. My grandparents had been there for me my entire life, not helping out wasn't an option as everything that was good in my life was pretty much owed to them..and I loved (still love) them dearly and with every fiber of my being.

At first I started spending weekends with them, helping my grandmother do the cooking and cleaning and administering medication..or staying with Grandpa while she went to the doctor for her own health issues. But once he got worse, my social life completely stopped, I was laid off from work due to missing so many days and not being able to devote as many hours, and my relationship started to fall apart. I was also doing my best to stay strong for my grandmother, but it was tearing me up inside to witness my grandfather deteriorate so quickly. I'd sleep maybe 14 hours a week just to give my grandmother the chance to rest, while I stayed up with Grandpa in vain attempts to help him through the pain. Many nights he'd just scream and I'd hold him and he'd say "What have I become, I've become a piece if *kitten*"..you have to promise me you'll take care of your grandmother"..and I would assure him that I would. One night we were sitting in the living room and he said "Candi, I have to get dressed..they're coming for me" and I remember getting the chills but I thought maybe it was just the meds talking. I was supposed to spend that weekend with my fiance but opted to stay with my grandparents instead. An hour later, my grandfather took his last breath in my arms.

I held my hysterical grandmother up who'd just lost her partner of 46 years, while they wrapped his body and carried him away. Shortly after his death, my grandmother moved in with my fiance and I, I did my best to pick up the the pieces of her life...and watched her closely because she sank into a depression so deep she became suicidal. Her health also started to decline even more. Eventually she decided she no longer wanted to live in New York and moved away to Florida to live with my mother. At that point I remember my friends telling me "Well Candice, it's over..you're free" but I'd never felt more lost. It didn't take long for me to find out that my fiance had been cheating on me with a mutual friend while I was busy taking care of my grandpa, and between my relationship falling apart, me losing my job, my home, my dog., friends, my Grandpa who was like a Dad to me..I just sank.

I packed up my things and moved to Florida in an attempt to start over. My Grandmother moved out of my Mom's house and got a place just so I could live with her and she helped me find myself again. I gained a lot of weight during my depression and it was with her help i found the will to start losing the weight, go back to school, and get my life back. Slowly my heart started to heal a bit as well. But her kidneys were in really bad shape, and eventually she got so sick that she could no longer do anything. I took care of her, until one morning last Summer, I woke up with a feeling of dread and went into her bedroom to find our dog licking her face in an effort to wake her up. I knew..I went to her..laid down and put my head on her chest to listen for a heartbeat I knew would not come. It was a while before I was able to call anyone to tell them she died. I had never felt so empty.

I don't even know how I found the strength to get to where I am now, but I know she would want me to be strong. Both of my grandparents would want me to succeed..and keep going despite any obstacles thrown my way. So, even though my heart was broken..and it just felt so wrong to continue living life without them I kept on. I've been steadily losing the weight, I graduate from Nursing School this June, and things in my life are finally falling into place after 7 long years.