Why do I feel so isolated from my family, friends, and life caring for my mom?

Dear jontur and other soul mates,

This is year 14 of caring for family members. It started with my sister-in-law struggling for 4 and a half years with ovarian cancer before it won. Then we had two good years before my mother-in-law had a major meltdown and diagnosed with cerebral amyloid angiopathy with leukoencephalopathy (long words for a form of dementia). We cared for her and my father-in-law in our home for 5 years until she passed away. Then there were 6 months of freedom with just my father-n-law before my 94 year old mother become too ill with dementia to stay alone any longer. I had been caring for her for 6 years as she could not drive due to macular degeneration. So, I was driving to her house two to three times a week doing all the shopping, cooking, cleaning and taking her to appointments. When she moved in with us following progressive dementia and an illness that left her 24 hour care. My daughter is also living with us while we are renovating her home. She has a 16 month old son, so it is a pretty full house. Oh, we also take care of her son while she works. And my 86 year old father-in-law continues living with us. He has CHF, numerous by-pass surgeries and a valve replacement and beginning dementia, so he is pretty dependant too.

Needless to say, when my mother moved in with us I had no life either and it was both physically and mentally draining. If I got three hours sleep in a night, it was a great night. I was up and down with my mother all night long and all day with her and my grandson. I am an only child and since the death of my sister-in-law, my husband is an only child, so all of the care falls on our shoulders. So, jontur, I certainly can relate to your feelings of being isolated and trapped.

When my mother was diagnosed with failure to thrive, Hospice came into the picture and what a God send to my sanity they were. I was given 14 glorious hours a week of respite time. Plus, a girl came twice a week to bathe my mother and the nurse checked in once a week. We also had pastoral visits and a social worker who would check in once a month. I was out the door like a shot during those 14 hours of freedom. I hope you will contact agencies in your area for some help in your situation. Maybe there are seperate centers your mother and daughter could visit for a few hours a week allowing you a little time to yourself. How do you get out to do the grocery shopping right now and other outside responsibilities like doctor appointments? Even if you can’t find a program to offer financial assistance or Medicare coverage for these services, I strongly, strongly suggest you hire someone to come in a few hours a week and give you a reprieve. It is worth every penny. Use your mother’s money or tell your brother and sister they HAVE to chip in. If they won’t physically participate in her care, the VERY LEAST they can do is help pay for you to have a few hours of sanity a week. Your brother couldn’t take it and bailed on you, so he has to have some understanding of how stressful the situation is and how nerve-racking and demanding the circumstances are for you. He, of all people, should be willing to donate to a respite care giver. Your sister refuses to give you a break or take your mother at her home and has all kinds of advice for you. Tell her to put her money where her mouth is and that would be the best for everyone.

This is a wonderful site and allows people to vent and discover we are not alone. Sometimes that is all we need to know is we are not alone in our feelings of frustration and loss. There are others out there who understand and can offer helpful advice and suggestions. This is the site that kept me from losing my mind and pulling the plug more than once. Thank Heaven we have a place to be understood without judgment.

Sadly, my mother passed away last Dec. at the age of 95 and I deeply miss her every minute of every day. But, I want you to know, when I was caring for her, I had some not so nice thoughts and I still feel guilty for those. My mother was the kindest, sweetest person on the planet and I loved her with every fiber of my being and all my heart and soul, but during the exhausting times when I felt trapped, alone and in tears for both myself and my mother, I asked “when will this all end? I want my life back!”. And I prayed for it to end. I not only wanted my life back, but it tore me to pieces seeing my mother go through the terrible struggles, mental anguish and torment. It was L for everyone. I didn’t want to lose her, but I didn’t want her to live any longer either. It was a horrible time. It was totally against every moral aspect of who I am to put her in a care facility. I just couldn’t do that to her, but I had to relent the last two weeks of her life. I just couldn’t do it any more. She was at a point I could not control her agitation and she would try to get out of bed, yet she couldn’t walk, was dead weight to get her to the bathroom and beyond comprehending anything I tried to do for her. Thank the Lord for my wonderful husband and his help and support. I finally had to let go and let God. That was the day before Thanksgiving last year and my small grandchildren were coming for the holiday. I couldn’t care for my mother, cook and spend time with them in her condition. I was trapped by her bedside 24 hours a day. But, most of all, I know she would not want them to remember her like she was, so I placed her in the marvelous care of the Hospice House. I could not have given her the excellent care they did in her final days. Shortly after Thanksgiving she slipped into a coma and within two weeks was gone.

I was relieved, but had such horrible guilt for some of the awful and unforgivable feelings I had while caring for her. I never, ever let her know how I felt, but I hated myself for wanting it all to end so I could selfishly have a life back to enjoy my grandchildren and my “golden years”. I am 62. I think I am finally beginning to forgive some of my feelings and love myself again and I have to admit, it is wonderful to have a bit of my life back. Like I said, we still care for our grandson and my father-in-law, but it isn’t the 24/7 draining kind. After what we did, this is a piece of cake.

What I guess I am trying to say to you, jontur, is there will come a day when you will have your life back, even though it may not seem like it at the current time. I know when I was tied to my mother and the house 24 hours a day, I thought I was never, ever going to have a life again. I hope your daughter’s needs are not so severe that they require you to have 24/7 in home devotion to her. You deserve to have a life and some free time to call your soul your own. It is worth every penny you may have to spend for respite care. The time you are spending with your mother will bring beautiful memories and cherished times you would never have if she were in a care facility. When all the doctors and nurses were telling me I needed to place my mother in a facility I fought with them tooth and nail to keep her with me. They told me she would have been gone over a year before she died if I had not cared for her. Those precious times with my mother were gifts from God and I wouldn’t trade those moments for all the freedom in the world. Remember when things get unbearable, stop and think it will all end one of these days and all you will have left are those treasured memories.

Allow yourself the bad thoughts, they are only natural, for they too have there place in the stress of care giving. During those times, come to this site and share with others who will understand and not judge. And then go back and grab a hold of those special minutes in time that will stay in your heart forever and realize what a wonderful daughter, mother and person you are. Your brother and sister can not hold a candle to you and someday, they will realize what they missed. You truly are a beautiful person and immense blessing your mother and daughter. You carry a strength and love in your heart your sister and brother will never know.

Even through all the heartache and suffering with my sister-in-law, my mother-in-law, my mother and now my father-in-law, I wouldn’t go back and change a single moment or decision we made keeping them with us. My only regret is I couldn’t have made their suffering and struggles go away. I look at those times now and wonder how I made it through, but it was one day, one hour, one second at a time putting one foot in front of the other and doing what I had to do to manage. You discover a lot about yourself and what you are made of when you survive the tough times. You are a truly loving, caring, kind and good person, jontur, as well as, all the others who so selflessly give of themselves so others can find love, security and as much happiness as possible as they struggle through this life too. Hang in there, you are not alone, there are many of us who have been there and done that in very similar fashion. All I can say is enjoy those special times, for they will all too soon be over and there will only be fond memories in your heart to hold instead of your mother. What I wouldn’t give to put my arms around my mother just one more time and tell her I love her just one more time. God bless.

I know that what I have to say is not much help as I am to the point where I cry A LOT! Feelings of isolation from my family and friends in the outside world seem worlds away. Furthermore, family doesn't seem to understand at all, nor even care. I am very blessed that I am able to have Caregivers to come in at night in order that I can sleep rather than have to get up every 2 -3 hours to take my husband to the bathroom. Outside of that, I am on my own. This site helps to read about others situations and solutions and that I am truly not alone as I feel.

Have you ever heard the one - "If you want to make God laugh, let him see your plan." I know that I was put on this earth for a purpose. If this is what it is, then so be it. I love the woman that I am.

Cleaning up for the day... Almost time to start job #2 (ha ha ha)... Hang in there everyone. We'll all be here tomorrow - God willing :)

the major question of the day/week --- Dear God, when will this end

Jontur...I too am in the same boat and sometimes feel like it's sinking. I tried for two years to "do it all by myself" ..but learned recently that I am not superhuman. Do you have hospice available in your area and if so you're mom's care may be covered entirely by Medicare. I have them come a few times a week to bath my 86 year old mom with alzheimers and a nurse comes twice a week. They also offer "respit" which can give you a few days to yourself with mom in a facility. I know you feel like the rest of the world is enjoying life while you are "trapped"...I go from screaming anger (not withing earshot of mom) to major pity party crying asking God when will this end. Family is around but they have their own problems and issues to deal with so just the sight of another person albiet a nurse or bathaide is like heaven ...to actually have another well person to converse with even for a short time.
I've also started a small group of ladies on Facebook (most of them being classmates of mine back in the 60's all going thru the same "living with a parent with dementia/alzheimers". We laugh * Cry * vent * and sometimes just be silly ..it helps so much. I pray for all here who are making this sacrafice for their loved ones...we are a special breed...God Bless.

You are certainly not alone. My twin sister lives next door to me and when our mom was alive (she died 2 months ago), I rarely saw my sister except for a quick visit or occasional help. I think caregivers are special and that there are some, like your brother, that simply cannot cope with the stress. It isn't fair. But you might remind your brother of the care your mom gave him as a child, and that it probably wasn't easy. Ask him to think of it as an opportunity to give back. Find the humor, surely there is some, and that will help relieve the stress. Don't give up, whatever you do. And don't do or say anything you'll regret. I'd give anything for just one more minute with my mom. Karen

Isolation seems to come with the territory, my friends. The on-line people who "get it" are much more understanding than my local friends and family. I care for my 88-yr.old mom in my home and I know that others just don't know what to say or do. I can't say it's not hard. It is. Find the ones who are in your shoes and share. That helps. Also, if you can afford some respite now and then, you will get some personal renewal. All the best.

Jontur, I feel your pain. As others have said, you are not alone in this. I care for my 86 yr old mother who has possible pancreatic cancer and when I took her in she had adult failure to thrive and an untreated broken wrist, dehydration, anemia and malnutrition. She was living in her home with my brother and sister in law who were supposed to take care of her in lieu of rent and utilities. Needless to say, they did not. If they had she would not have ended up in such a sad shape. Some siblings are just worthless.....two of my brothers are helpful. One even sent me money to hire a sitter so I could get out of the house. I had to take the money and pay a bill tho. No only am I stressed out with the caregiving, but since I had to quit my job to care for her, money is extremely tight and that stresses me too. I have been caring for my husband for the last few years. He is not disabled but he has major depression with panic disorder and finds it hard to get out and work.
You are a strong woman and I'm sure you will be able to care for your mom, just remember to care for yourself too. That can be very hard when you are out of funds. Would your mother qualify for Hospice? My mom has a nurse come in twice a week and an aide comes 5 days a week to bathe and dress her. That is a tremendous blessing. It wouldn't hurt to check on this.
I too am isolated much of the time. I've found out who my real friends are. Mostly cyber friends I've met on this site. I thank god that I've found them. It helps me stay sane. I mostly post on the Grossed Out thread, but sometimes I just have to drop in to others when I feel expecially drawn to the plight of a caregiver. Generally one thread is as supportive as another, but I like to stay with one so I can develop personal relationships with ones I talk to the most. Stay with this website and I promise you it will help.

A big hug to you,
Ann

What a well written comment. it is what it is. And I'm learning that we have been given this task for some reason -- but won't know for awhile. I'm thinking that somehow God says -- these people need to get to know each other and help. So, instead of lamenting on the fact that I'm caregiving without support of my siblings, I have "new" on-line compadres who are all evenly yoked.

Funny, just when you get to the end of your rope, God hands you a life line. In reading these posts, I know that I have someone out there who will listen. None of you will be able to fly into my life and lend a hand, but sometimes lending an ear is the next best thing. I'll try to be brief in my issues. I have been taking care of Dad for well over 3 years. He was diagnosed with dementia in 2006. It was decided that he couldn't live alone any longer. So, on the premise of a medical issue, he came to live with me. A short time later, he decided he wanted to live with another family member. A few months into living there, he got into a full blown argument and was told to leave. The family member even went so far as to bring his remaining belonging to my home. I'm told I made the argument up in my head - that it never happened! We have had several family meetings which have all resulted in nasty arguments and accusations being thrown about towards and against me. It is now three years later and Dad is still with me. My family says I don't make them feel comfortable when they come to visit Dad (even though I work 8 hours a day and they could certainly come when I am not around). In addition, not once have I ever refused to let them come to see Dad. I suppose I just don't roll out the red carpet for them, and I should. I have hired a part-time caregiver to care for Dad while I am at work (using his money) but we cannot afford someone when I am home, so all of the rest of the caregiving comes from me. To make matters worse, I suffer from a medical condition that is aggravated by stress, food and anxiety. My husband works out of town and sadly when he is home, I don't feel it is his responsibility to care for Dad. I am not being a martryr or anything but sometimes it just gets to be too much. Dad is not "ready" for either an ALF or NH. His dementia is well within control although we do have issues from time to time. I just don't understand why it is that other family members feel that they don't have to respect me in my own home. When their guilt hits them, then they feel it okay to just come into my house unannounced or unexpected. I know that nobody can help me but me. Even blogging can be therapeutic since I am anonymous and therefore fingers can't be pointed at me. Caregiving is so very difficult. I only talk with a few members of my family and sometimes even their excuses for not coming to help seems lame. I can't remember the last time that I went on vacation and even when I am home (for a holiday) it turns out to be work since I have Dad to take care of. I realize that I will be rewarded by our God at the end of the day, but sometimes I need that reward now. I don't see the light at the end of the tunnel any time soon. I have learned that those who understand my plight are my true and real friends and those that don't understand or won't understand or can't understand just haven't walked a mile in my shoes so to speak. Good days are getting to be more and more rare and so I do my best to surround myself around only the things that are positive. If my family has decided (for whatever reason) to not see their father I have learned that it is not my fault or my problem. It is easy for everyone to find a reason to not see Dad as our lives are all 'busy'. I know that at the end of the day (when all is said and done) I will be able to rest and relax. For now, this is my life. To some degree, while I didn't sign up for it, I wouldn't have it any other way. We all use this site to vent and sometimes once in a while we are given just the right answers to our questijons and concerns whether it is about our aging parent, disabled child or ourselves. With the holidays quickly approaching, I have learned that I cannot do everything. Gift purchasing will have to wait, trimming the tree, putting up lights, sending out cards, etc... and all of those things that I used to do are so unimportant. What I do everyday is important to both myself and my parent. All of these things (while lovely) all become stress related since my time too is limited. I know I didn't answer anybody's question, but as it has been mentioned, we are all here for each other. Thank you all for your insight, your prayers and your strength. Knowing I am in such good company makes this journey I am on so much more tolerable. God bless each and every one of us. I hope, one day, should I ever find myself in this boat (of being an elder - ha ha) that someone like myself is there to lend a hand. It's not easy, but it is who I am and I'm too old to change now, so its just easier to try to do my best...

No, you are not alone. I am an only child caring for my Mom with cancer. I moved her in with me 2 years ago. I totally understand the sacrifices you are making. There is not much help out there for caregivers. Mom's doctor did approve home health, which was a Medicare service and free for us. They sent a nurse once a week, a lady to bathe her once a week, and a physical therapist to help her regain balance and strength. If your Mom or daughter could qualify, that really was a help. Of course, it only lasted about 6 mos and then you have a period where Medicare won't pay for a few months. But you can re-qualify. I didn't get my life back but is sure helped out. Don't know what to say but hang in there. This is the toughest job I've ever had. But this site helps you know that you are not alone and thoughts you have are shared by others.

Hi Jontur, I'm glad you found this forum and us. In my family I am the one who takes care of everyone also, I'm on my 3rd parent. It's good to come here and talk. It helps to just have someone to listen to us without criticizing or judging us. Our siblings should help but in almost all cases it's one of us in our family that cares enough to do anything about them. It was a good suggestion to see if you can get respite care one day a week even if it's only for 4 hours or so. It would give you a little breather to just go see a movie, go for a walk, or window shopping, just anything to have a few hours where you are away from the constant needs or demands. A Social Worker should be able to help you or you could just google your zip code and respite care and find what's available in your area. If you need to just vent or connect with others on a daily basis come over to the "grossed out" thread and join us there. :)

Are you in a position to hire some respite help? If you could get someone in a few times a week for a few hours, it would allow you to get out and have some time away from the stress. Perhaps your siblings might contribute to that, since you are bearing all of the responsiblity?? You might look on Care.com for someone with a background check, that you can trust to look after both your daughter and your mom for a few hours a week. It could mean a huge difference to you. It seems there is always one child in the family who has to do it all.............I know it is overwhelming and exhausting. Your family should give you some kind of assistance.

Oh, and another thing --- I'm in the process of re-evaluating my friend base since they don't understand or respect whats really going on, and am focusing on those like us -- i think this is where your support needs to come from

The reason you feel alone is because you are in your situation. That being said, you are not the only one strugging with this as we are here for you as support and a sounding board. I, too, am caught in the middle, and I'm struggling to get grips with the truth. Last Thursday, when mother fell, and all the pills I had separated the night before were scattered on the floor and I could not lift her up by myself -- that was a defining moment of reality. Luckily I caught someone at home to come give me a hand, but otherwise, i'm the sole caregiver. It hurts tremendously that my sister-in-laws, don't want to hear about it. perhaps because I might ask for help -- I don't know, but today and this past week I've been trying to deal with the hurt and frustration of it all too. This all proves that we are alive and our lives are full -- believe me.

Jontur, I'm not the first to tell you that you are not alone. But let me be the first to say that you are taking the high road, a path with rewards you can't even see from here. If you ship everybody off to group homes and make them someone else's problem, and then go get a job with a fat paycheck and a company car, your life would be much easier. But you would experience a soul-death from which you might never recover. The time, energy, effort and emotion you put into the care of your special-needs loved one are worth everything they are costing you. Your care recipients may or may not ever thank you for all you do. At the end of your life, and if you witness the passing of your loved ones, you will know I'm right. I've got 17 years experience with my wife and mother-in-law(in wheelchairs), my mother (going blind and deaf) my step-dad (dementia) and my oldest brother (don't ask). I've got my third hernia, a bad back, blown knee and arthritis in both hands, and I wouldn't change a minute of it. That's the only attitude I can find that doesn't leave me suicidally depressed. Instead, I feel like the luckiest guy alive.

I just read your ? And your story. I don't know what the answer is, but I do know that u r not alone. I know you feel that way, but u aren't. I realized that so many of us have made the commitment to care for one or both of parents. It is so stressful, but even when there is a bad day, I wouldn't change caring for my mom. Maybe there is a reason, a higher reason. Maybe this has not helped, or maybe it has. Just know that there r others who care. We r not alone.

Thank you for your comments. I didn't realize completely how much all the caregivers out there have in common. It's like reading something I wrote about what i was going through but it's someone elses feelings.. wow. I think this site will be of great help and support..Thanks all

Yes, I related to your circumstances and lately I've actually been feeling lonely. I have a 30 year old son who is special needs so I know how exhausting it is taking care of an adult child and elderly parents. Fortunately we have caregivers who are here Monday through Friday during the day. Right now I'm stealing time for a nap while they're here so I'll be able to manage taking care of everyone later today.

Jontur, you are not alone. Alot of ones here have or are going thru this feeling of isolation. I personally feel this way. I found this site and let me tell you it has helped. I have connected with others who understand exactly what is going on and understand my feelings. This in itself has helped alot with my overwhelming feelings of being alone. Its such ashame when you have other siblings that won't help. But that is their problem and in the end they will have to deal with the guilt. You are a wonderful human-being to look after your mother and daughter, allowing them the quality of life to remain at home. Don't ever feel that you have to choose. Just learn to prioritize your caregiving between the two. Some days will be hard, honestly. But think as positive as possible. Pat yourself on the back. You will get strength from a higher power to make it thru each day. Come back here often to vent. No one will judge you. We are all in this together. The caregiving community is very supportive.