(Author’s note: I’m sorry this isn’t my usual humor. Sometimes there’s not very much to laugh at, and sometimes we need a dose of reality to help put things in perspective).
There are times when I fall into depression. Not just mild depression, like “oh, the republicans are still in the White House; I’m so depressed,” but more like, “It’s Tuesday, I wish I were dead.” Yeah, having the republicans in the White House on a Tuesday makes me doubly depressed, but wishing I was dead doesn’t need to be because of George W. Bush. In fact, Bush is the last person who makes me wish I were dead. The real reason I wish I were dead is more personal, more tortured. I wish I were dead because of my mother.
Now for those who don’t know, I’ve been taking care of my mother full time, on my own, with no help*, since she started to have problems back in 2003. It started with severe osteoporosis, which was manageable and I still had a life, but in 2005 my mother had a fall, and aside from permanently dislocating her left shoulder something else changed.
It wasn’t a subtle change at all. My mother mentally broke down and has never been the same since. By not being the same, I mean I literally feel like she is a different person from the mother who raised me. Now most of you are wondering why my mother isn’t in a nursing home, and that’s a good question. The main reason she’s not in a nursing home is that my family never believed in those hell holes. And I’m sorry if people feel that nursing care facilities are the best place for the elderly and infirmed, because I don’t.
Now you can write me off as a nut because I don’t subscribe to the medical industry as an all knowing authority figure, but I’ve always had problems with authority figures and since my mother’s problems started I’ve had more than my fair share of dealing with hospitals and doctors who have inquired about insurance and financial situations before even asking for names. (There have been a total of 31 doctors to date since 2003, including the 12 who couldn’t diagnosis her costoschondritis, the inflammation of the cartilage around the rib cage, a nervous condition associated with arthritis).
Example: The last time mom was in the hospital, this past March, the day she was discharged the doctor called me at home to tell me she had to be released because, “the hospital has to start absorbing costs.” It wasn’t about whether she was ready to come home. According to one doctor, not her primary because he was away as usual, “she had a touch of hepatitis but it cleared up.” Well then, obviously she was ready to come home.
The problem is I love my mother. I don’t want her to be miserable, and I know a nursing home wouldn’t be the best place for her. The best place for anyone is surrounded by their family, in their own home, and there are many doctors who agree with me. It seems many nursing care facilities also agree with me, preferring for a dying patient to be taken home and put on hospice.
Mom isn’t dying. Well, not right away, like the one doctor told me two years ago when he said my mother would be dead by August of 2005. He was wrong. I really should look into suing that bastard. Again, I do love my mother. I don’t want her to die. Of course I know she’s going to die. We all are. The thing is my mother just exists. She’s not living her life unless I force the issue and get her up and dressed and take her out for whatever reason.
I literally mean I have to get her out of bed; helping to swing her legs over the side of the bed and pull her into an upright position, and then help her stand up, take a couple steps to the commode, pull down her Depends, guide her to sit so she doesn’t fall over, then change the Depends, wipe her, get her dressed, stand her up and guide her to the wheel chair, wheel her out to the dining room table for whatever meal it is, and maybe take her out to a doctor’s appointment, or hair appointment, or just out for a ride so she can see the world beyond her bedroom.
That entails wheeling her out to the car, standing her up and balancing her while she holds on to the car door and slowly, and I do mean slowly, turn with my holding her up by the back of her pants so she doesn’t fall, and guide her to sit in the car. Then I swing her legs into the car, get her situated in the car, buckled in, close the door, put her wheel chair in the trunk and trudge around the car to the driver’s side and climb in, wishing I could just go to sleep and not wake up until this part of my life is over.
And I feel guilty. All of the time, I feel guilty because I love my mother but I do see her as a burden who has stolen my life from me; and that makes me feel guilty. I love her, but I wish she were the person she once was, long ago, before she developed osteoporosis, and diabetes, and got occasionally delusional to the point of wanting to talk to me, and asking me where I am because I’m obviously not me.
She tells me my grandmother is here; a neat trick, for someone who’s been dead since 1985. Sometimes she thinks I am my grandmother, or who knows who she thinks I am, and then everything is normal, and I wish I were dead so I didn’t have to deal with facing my mother deteriorating into her dotage, her body betraying her to the point of relying on me for every single thing.
On the bright side she can sort of eat for herself, without help at the moment, and for that I’m thankful. She can talk on the telephone, which is a blessing because she has several friends, all in similar stages of deterioration, who call her daily and they all lament the downward spiral of their lives, and I want to cry when I hear any of them talking. I get depressed.
But my depression is nothing compared to what my mother and the millions like her go through as they near the end of their lives. I realize how selfish I am for wishing I were dead so I didn’t have to deal with my mother, and for getting angry at times because she wakes me up after I’ve had all of two hours sleep to deal with her feeling “not quite right” and spend an hour trying to get her to tell me what’s wrong.
I’m not a good son at those times, I’m a selfish human being, and I hate myself for being so selfish. And yet, when I talk to her friends they all tell me how lucky she is to have me and how they wish they had someone in their lives to take care of them the way I take care of my mother.
And then I feel even more depressed and guilty because I do love my mother, and I resent what has become of my life and what I feel I’m missing out on while I’m young enough to enjoy life. I realize how lucky I am to have my mother at 80 years of age, semi-sane most of the time, even if she can’t walk or do much of anything else without help. Her friends have children who are so busy with their lives they don’t even notice that their parents are falling apart before their eyes. They don’t have time in their busy schedules to go for a ride with their mothers or fathers just to see the town and what has changed in the last couple of years.
And another day passes and I look at all the other things looming on the horizon, knowing my mother will only get worse and she truly is at the best she’s ever again going to be; and I have to cope with all of this while worrying about money and survival in general and daily life that is overwhelming on its own without the added burden of my mother.
I think about these things and realize how lucky I am to make it through the day to face another day and know it isn’t worth dying over because everything will eventually change. My mother will one day be dead and I’ll have to face the world without the worry of taking care of her, or getting her out of bed each day and making dinner or getting take-out, or getting her pills to her on time or any of the things that have become my life, and that thought is depressing.
It really is hard, and terrible, and sad, and yet I’m here because I choose to be here. If I really were the terrible person I imagine myself to be I would’ve tossed my mother in a nursing home two years ago and not given her a second thought. I would’ve gone on with my life and perhaps visited her once a week, or once a month, and shaken my head every time I visited for ten minutes and felt bad for all of two seconds because of the way she was deteriorating, and put it right out of my mind the moment I walked out of the home and hopped into my car to drive off to my life, not giving a thought to the fact my mother couldn’t do any of the things I took for granted.
I’m not that kind of person. I guess I was raised right. I get depressed. I cope.
*Note. I have looked into all the services offered to the elderly, and aside from what mom doesn’t qualify for, the services are little more than baby sitting services. In fact, a baby sitter would be better in most cases than social services.
Robert is the author of the novels Cool Mint Blue, Melba Ridge, and the recently released The Adventures of Homosexual Man and Lesbian Lad; and the creator of the on-line comix Impure Thoughts found at his web site Inside R.A. Melos, as well as having been an on-line staff writer for QBliss where he had a monthly humor column, Maybe A Yip, Maybe A Yap. In his non-writing time, when he's not studying the metaphysical or creating a tarot deck, he sells real estate in Middlesex County New Jersey, hangs out with his dog Zeus, and spends time at the Pride Center of New Jersey in Highland Park, NJ, where he is on the Board of Trustees.
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4.11.07 @ 11:01a
Robert, it is very admirable that you care for your mother, but you can't do it by yourself.
This isn't an assessment of your abilities as much as it a statement of caring.
I'm sure you've already consulted with the National Caregivers Association , but check again to see if there are others like you who can provide support and encouragement.
Isn't there an adult day care facility in your area or within a short drive that would allow your mother to stay there during the day one or two days a week? Yes, in a way, it's babysitting. But from a different point of view, it's also an opportunity for her to be out and socializing, maybe receive some touch therapy, and, also important, a chance for you to catch up on sleep, housecleaning, work, life, whatever.
4.11.07 @ 3:47p
Tracey, one of the problems is scheduling. Mom never did get up in the mornings, nor do I. For me it's mostly because people don't look at houses in the mornings, they look at them after work or on the weekends. My busy days as a Realtor are weekends and evenings after 6. Those are the times I need the most help. I don't believe in doing what Realtors call double duty. Showing the wife the house in the afternoon and bringing the husband back in the evening. That's a waste of my time. They need to see it together and discuss it together.
When mom was in rehab she the aides would get her up at 7, and for the rest of the day she would sit in a wheel chair and sleep, or the aides would put her back in bed by 9 AM. My family in general worked nights, so anything before noon has never worked for us. And changing mom's schedule won't change my need for evening help.
The daycare centers charge the same for adults as they do for children. The adult daycare in the area is $125 a day. Mom's insurance doesn't cover that.
I know there are people out there doing the same as I am. I've met some, and talked with some. Many people sympathize, but the reality of the situation is, "there, but for the grace of God, go I." People care. One of the members of her church stopped by three weeks ago. It was a first time visit. She said she knew mom had been sick for a while, but this was the first in her busy schedule she could get a break. She's retired and has been for about 10 years. She brought a flower that had been in church Sunday of that week. She stayed 10 minutes. Actually 20 because it took 10 minutes to get mom out of bed.
Catching up on sleep isn't possible. I spoke to mom's doctor, who guesstimated I'd need about 6 to 8 months of vacation time to get rested again.
Mom's socializing doesn't work with strangers. I don't know where I mentioned it before, but when she was in one of the rehabs, she refused to socialize with the other patients. One of the aides took her to a concert they had. Mom told the aide if the aide forced her to go she'd scream her head off until they took ehr back to her room. The aide didn't believe her. They eventually took mom back to her room. She got her way and was content. She doesn't like mingling and socializing.
I've recently discovered meditations that help me to cope. The depression isn't as bad because I refuse to allow it to linger. I meditate a lot.