I have been dealing with my elderly mother's health issues constantly since her open heart surgery during May, 2009. I have lived and breathed hospitals/chronic care facilities/skilled nursing facilities for almost 3 years. I now have her in our home since October, 2011 and you would think I would now feel as though things are a little easier as I have in-home part-time care and still work. Quite the contrary. I no longer need to drive 33 miles one way to visit her at a chronic care facility. I spent all of the summer of 2009 on leave from my job sleeping at the hospital parking garage and 24-7 keeping close tabs on every step of her care. Frankly, it is because I have made this my life that she is still alive. I have documented every step of her care and have been instrumental in making sure that the right decisions were made. She has COPD, congestive heart failure and is otherwise of a very sound mind at age 85. Today I took off work for the day to accompany her to the GI doctor appointment for an evaluation. She is newly diagnosed with gallstones. She was on a ventilator for 2 years and is considered a "miracle" person to have gotten off of the ventilator, although she has a trach and it is opined she will always have a trach. I am beginning to get angry. For the most part I can deal with things as my job is my outlet and I work full-time. But when I come home from work at 5:30, I want to have some time for me and I am angry that after working 42 years I cannot take vacations and enjoy life. I have sought counseling and I have some close friends who care but I cannot keep venting on this to them as I will cause them to distance. I am not in a good place this morning because I chose to take off work for the day in order to go to this appointment this afternoon but this is yet another example where as a friend of mine explained last night....I chose to have her in my home so I now have the responsibility of a child. I never had children. I never had pets. I worked hard all of my life being a great daughter...taking my mother on trips galore and meeting her every need. I am 61 years old now and today I am just angry. Putting her in a nursing home is not an option. I have had enough personal experience to know that she would not last very long at such a facility as she has already gotten an array of hospital acquired infections and the pulmonologist has advised me to keep her out of the public until spring because of the flu. So this is my new life which is no life. Granted, I have it better than so many others but I am just too angry this morning. My morning will be spent on taking care of her needs. I have to get prescriptions refilled, contact a hospital for medical records, contact her doctor as I can't access their patient portal which I am doing all of the right things. I have one sibling who lives 4 hours away and he is useless. He came down recently prior to Christmas for the first time in 15 months! That was his duty visit. My mother and I have always been close. She is not abusive. She is sweet and is trying her best to have a quality of life. But at my age she was having her life and not taking care of an aging parent. I am sorry. This is hell on earth. I take time for me but this does not negate the fact that I am tied down granted my choice as my friend pointed out last night. Living 24/7 with an aging parent and feeling as though I deserve a life and getting increasingly angry is just what it is. There is no solution. I don't need advice on therapy (done that); making time for me (I do that); because at the end of the day,it is what it is. There is no easy answer. This is my new life. I told a friend recently well I need to leave work now and start my "other job" at home. Her care isn't even that demanding. I give her medications during the eveing and monitor her SATs to determine if she needs oxygen. But I am getting caregiver burnout here and yes I have researched this any nauseum and know all about the signs and suggestions. So I appreciate being able to vent today and I appreciate everyone on this group who can identify to some extent. You all get it. I am just angry today. I am sure it will pass. Tomorrow I return to work and will feel at least for a few hours like I have a life away from home.
Caring for someone 24/7 is hard... Many "health care agencies" offer respite care and that will give you the opportunity to do something for yourself. Call your local Area Agency on Aging there should be someone who could help you. I facilitate a support group for caregivers and feel it is VERY helpful to everyone. We share information we listen we encourage and we often hug one another! Caregiving is not easy I have done it personally and professionally. Please take care of YOU too...
(half jokingly) say that I will probably go to Hell for not being a cheerful giver.
Obviously I have made a long story even longer (sorry) but I sure do know how you feel, and if you come up with a way to improve my attitude I will be forever indebted. And if not, just thank you for sharing that I'm not the only one who feels this way. I hope things improve for all of us. Like Tiny Tim said, "God bless us every one".
My mom is 85, and has AML. I have been her caretaker 99% of the time since her diagnosis, but have been her caretaker for 5 years. We share her house.
She has started to go downhill fast these past few months. She tried chemo, but we stopped it after 3 rounds.
She is almost total care, and is miserable and I guess in denial.
I work full time and because I must be some sort of masochist, I work as an RN in a very busy city hospital and then come home to take care of my mom. I have family in town, but their contribution is to stop by and watch tv for an hour and leave. I have tried everything to beg for some respite, but short of having a total nervous breakdown its not happening. My paying job is very stressful, but it has become my outlet from my mom. I have a caretaker who is truly an angel, but if my mom doesn't die in the next few months, she'll be broke.
So now I am going to have to do the medicaid thing, but hate to tell the facts to my mom that she is going to be out of money soon, doesn't own her house (its reversed mortgaged), and we need to her to get serious about the hospice route -- she is not going to get better.
The worst part is no one in my family loses sleep over this, or misses out on one of their social engagements. Things came to a head this am when I realized it really really hurts not to even be able to go to the midnight showing of the last Twilight movie. Everything else has been taken from me, but to not even let me indulge one more time, when my entire family knows I'm the original Twihard....it has shattered my heart. I had my meltdown in the grocery store, where I picked out a wee turkey breast to cook for myself, knowing no one will probably even think of us on Thanksgiving. So it will be my mom and me on Thanksgiving, someone might stop by for a moment -- but I'll cook something for myself (my mom doesn't eat much anymore) and I'll resent things more and more.
I am so sad, and hate to admit that I resent this situation. I never wanted to be her caregiver. I'm venting and I'm frustrated.
Still, I often think of how much better it would be if there was family and community involved. But everyone is too busy, and it's not really their job, so here we are. If you are like me, it's not the caregiving so much as the not having any company or fun. It can get mighty lonely going through a routine that is not much fun.
I try to cope by working on little projects which take my mind off the fact that I am so housebound. I recently started teaching myself to learn to play the piano on an electric keyboard and I cannot tell you what enjoyment I derive from this. I also am trying to learn to use a serger which has been sitting in a closet for years. These things keep me busy in another way and "up" so to speak. I have never been a housebound person and love the outdoors and fresh air so as often as possible I load her up in the car and although we can't get out and walk or ride a bicycle like days of old, we can enjoy the drive and the beautiful scenery as the seasons change where we live.
I hope these few ideas give you some insight to some of the things that you, too, can perhaps take advantage. I often think if the shoe were on the other foot, would my sister care for me as I do her. I would hope this to be true and she often tells me how she appreciates my help and that in itself is payment enough.
I am fortunate in that I do not work outside the home as I am retired (I am six years older than my sister) and the job of taking care of my sister is a full time one for me.
I do hope you can find some "hugs" for you in my comment and are able to see tomorrow as a better day. Hang in there and keep on truckin' Angel of Mercy.
I also vent, then wake up the next day thinking that it really isn't all that bad. There are good days and bad. Then there are the days from hell that make me wish I could crawl under a rock. I have a feeling that the boomer generation got caught in a period of change. People live longer now, but many did not prepare financially or mentally for problems that come with old age. Many want to remain in their homes, instead of going to senior communities.
Your words about your mother not being a caregiver at your age reminded me of a conversation I had with my mother. She was complaining about how my brothers never visit. I asked her if she had visited her parents when they were old. I knew she had gone down for a week every year or two. I hoped that it made her realize that she was asking more from her children than she had been willing to give to her parents.
Bonnie, you seem incredibly strong to me. Having a job and caregiving for such an ill mother is quite a demanding life. I don't have any answers on what to do, since I haven't been able to figure it out myself. I have many thoughts about how it would be better -- like what if there were a lot of people around, making it a happy environment. I don't know if it is my imagination, but often it feels like others avoid contact with old people or sick people. They talk about how wonderful the caregiver is, but then disappear. Sometimes I want to say, "We're not contagious." However, I know many people are not comfortable with the situations we face every day.
Pardon the rambling. I know there wasn't any advice here. I just wanted to say that I understand how you feel.