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

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.

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.

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

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.

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

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.

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...

Hi Baumgark ~

Sounds like you might want to start interviewing other assisted living centers or nursing homes. They all aren't terrible and give poor quality care. There are wonderful places out there with the staff to give your grandma the hours and attention she needs and, from what you say, she demands a lot. You are too young to be devoting night and day to her. Remember, working in health care for 12 years does give you some knowledge of what to expect, but at the end of your shift, you got to go home and decompress. That is much, much different than the 24/7 responsibility. Your family and your health are at stake. It is exhausting and difficult enough to care for someone who is sweet and appreciative, even with dementia, but it is another to put up with abuse from someone who has all their cognitive faculties.

Where are your parents, aunts and uncles? Someone of that generation should step up to the plate, not you! Or is it that grandma’s nasty attitude through the years has turned them all away from any desire to care for her in their homes?

Your family and young children need you to be there for them right now. They have full lives ahead of them and, as their mom, it is important that you give them the love and attention they need from you. Remember, your grandmother had the privilege and joy of raising her children and devoting her time to them when they needed her. Don’t cheat yourself and your children out of the same joys.

It isn't fair either, to subject your family to neglect and make their lives, and yours miserable because grandma is a grouch. And, at 86, she ain't gonna change. I don't think your grandmother will be happy no matter what you do or where she lives and all that is going to happen is you will miss those precious years of being a mother to your children. And, more importantly, your children will lose those beautiful and very important years of having you as their soccer/baseball mom. Time goes by so fast and you will never get these years back. There are no second chances or repeats. IMHO, don't give up this very special time in your life to care for someone who will only suck the life out of you and your family. You, your husband and children will miss way, way too much because you are tied to someone who is miserable and demanding.

Plus, her attitude will definitely affect your children’s outlook on life. Yes, we need to care for those we love and sometimes it is a good experience for children to learn lessons of love, giving and caring for family members as they grow old, but not when it may have a damaging or negative effect on their lives and future. Just a few thoughts to ponder. Best wishes filled with prayers.

Fifthchild: You are a good person and like most of us here, so unappreciated in our daily lives. As you said, we're not in this for the appreciation or kudos. It the real need of our loved ones which we respond to. It is a thankless labor of love we perform. You exemplify the cream of the crop here by acknowledging others and their burdents, sharing your burden and offering information which may help anyone of us.
Jontur, I'll jump on the wagon here and agree with the thread and with you. I'm alone in many ways. Two years ago my vision went bad and I've had a series of eye surgeries (both eyes). I haven't driven in two years - in fact, my license is expired. My husband works and I am stuck at home every day and, until recently, my activities were extremely limited.

My main function has been the long distance care of my Mom, many phone calls each day and calls trying to get another sibling to get involved with Mom. (Our parents retired to an area almost 3 hours from the nearest (disabled) sibling. I'm 8 hours away.) I've traveled all day by public transportation to get to Mom when it was impossible for my hubby to get me there by car. We all do what we feel is necessary in our situations.

Despite my vision problems, using magnifiers, I help Mom with financial issues and things that just overwhelm her. I've found appliance manuals online when she couldn't remember how to turn the oven on!

All of this is frustrating because I can't just get in the car and do what needs to be done. And I can't get anyone else to see how Mom's quality of life is falling apart. She tells me all these things but no one else. She hides the problems because she is afratid of loosing her "independence".

I know there are "in home" care services available. I've spoken to one trying to get help for Mom. (She kicked them out and then wouldn't let them in again.)

If you can't get good samaritans from within your family or friends, how about a local church? That's the least expensive approach.

In NJ, there is a company called "Griswold". The cost I was quoted was less that $20/hour and they will come in for just a few hours a day a couple of days a week. They will do anything - bathing, dressing, housework, cooking, shopping, just plain old companionship - whatever you need, including some medical services. I know this company has franchises in other areas and there are other similiar services.

You are not alone in your situation. Don't give up. Although it is not easy, you are doing the right thing. Venting and accepting advice and help from others on this forum also helps. Don't beat yourself up. Just hang in there and try to find hobbies and other things to keep you busy and get your mind off your problems. Also, you mght find it helpful to find a support group if there are any in your area. Sorry you are feeling so isolated. As our loved ones age, they may do or say things they don't mean as it must be frustrating to get old as we will be in their place one day. It is hard if we miss our old lives, but please don't give up and keep coming back and take care of yourself.