Original design ©Melanie Neer
I thought the above illustration as appropriate as we caregivers DO need to be kind to ourselves
Originally Published on Yahoo.voices on October 5, 2007
As more and more of us in the baby-boomer age have discovered we are now facing the new role that we must confront, and that is to become the caregiver of our aging parents, a role that is far from easy. Naturally many of us hope, that as our parents grow older, and are reaching their seventies, eighties or beyond, they will age gracefully, without any complications, whether medically or emotionally, to contend with. That is the ideal scenario. But for far too many of us, this isn't the case, as was with my own mother.
Life with my mother, as I still lived with her, was far from easy in the last ten years or so of her life. First were the obvious emotional problems that seemed to have surfaced. Looking back, I believe she may have had emotional issues all along but they didn't become apparent until about ten years ago, when I began suspecting that she may have been suffering from depression, that got progressively worse as time went by. She had many of the classic symptoms of depression, mainly non-motivation or taking an interest in anything anymore. As her symptoms worsened, and I suggested that she get some psychological help. She did, but unfortunately she didn't benefit from this help. Why?
One is that my mother wasn't the type to openly discuss how she felt, whether medically or emotionally, not even to me, and I seriously doubt, she was capable of expressing herself to a virtual stranger, such as one in the psychiatric community. Also, since she didn't sign a proxy, at least not until the last few months of her life, and by then it was too little too late, I wasn't able to get involved with her clinical care, so in other words, I had no say in the matter due to those strict and stringent Hipaa Privacy Laws. It was unfortunate too, that her psychiatrist didn't catch on to her emotional problems, first of all, because he didn't see her on a weekly basis, as is customary in psychiatric field, but only every few months; also, truth be told, she was a great actress and could come across very differently to the outside world; only I saw her true personality.
It wasn't until March of 2006, a few months before her passing, that my finally signed a proxy. l then made sure I went with her, to what was to be her final visit to her therapist. I conveyed to her therapist about the severity of her emotional disorders and depression. It didn't impress him one bit, and even said to me, that my mother didn't look very depressed. My mother sitting next to me, had a radiant smile on her face, and all I could think of, this psychiatrist, was basing his pyscho-analytical diagnosis that my mother wasn't depressed due to the fact she was smiling?
You can imagine my frustration about this. However, I also did have private talks with her social worker, and she did indeed suspect what I had thought all along, that my mother did indeed have severe depression issues, plus as she put it, also had a variety of other personality disorders, ranging to possible bi-polar, to dementia. When I would go with my mother to visit her social worker, the two of us tried to get my mother interested in doing things again, to take an interest in something, like perhaps take up oil painting again, a hobby she had formerly once done with a passion in her younger years, or to join in any one of the activities that was sponsored by the hospital clinic geared for the elderly. Our suggestions went to deaf ears, as my mother continued to be unmotivated by any possible activity to get her going again.
Besides her emotional problems that I was witnessed to and had to care for, it was in the year 2005 that my mother was diagnosed with esophageal cancer. The discovery was quite by accident. For about two years prior to her being diagnosed with the cancer, my mother was doing a bulimic thing...yes, as soon as she'd eat, I would see her race into the kitchen, stick her finger down her throat to purge. Now at the time, I didn't know she had the cancer. She no doubt did her bulimia bout as it must have felt uncomfortable for her to eat, but at the time I thought, oh, great, another psychological problem.
And, you better believe I was trying to notify someone, anyone about what she was doing, but again, because of her failure to sign a proxy at that time, no one, not her doctors, psychiatrist, or her then social worker (a different one, from the one I got to know), would listen to me. It didn't help the fact that my mother was tight-lipped and not exactly telling anyone of her discomfort, except to say that she had a lot of congestion, so no one suspected her true medical condition. Each and every time I did try to alert professionals of what she was doing, all I would get from these people was that because of the Privacy Laws, my mother's clinical care could not be discussed with me.
It wasn't until June 8, 2005 that it was finally discovered as to the why of her bulimic episodes. I had to call 911 as my mother had passed out while taking a bath. She was out cold. I yelled at her, slapped at her face to bring her to consciousness, but nothing, thus my call to 911. After a week or so in the hospital and a battery of tests, including a mini-camera that went down to explore her esophagus, it was discovered she had a cancerous tumor. Now the real care of her came into view for me. My mother was an extremely stubborn person. When it had been suggested to her, after her being diagnosed with the cancer that she should go to a rehab/nursing home environment, to get her nutrition built up, and to undergo the chemo/radiation therapy, she wouldn't hear of it . She wanted to stay home and have me look after her. It was fortunate that the hospital in question, where she had been diagnosed was quite literally down the block and she was able to get her chemo/radiation therapy there, but as for her other care it was up to me. She had a G-tube inserted into her stomach, in which I would have to give her regular "feedings" of Ensure through it to make sure she was getting her nutrition as she couldn't eat anything by mouth.
She also was quite vocal, however, in not wanting any outside help, that is some kind of visiting nurse service that could have not only helped her out, but given me some kind of time off to myself to attend to my own needs. As I said, it was all extremely frustrating and stress producing to me, but I gave in, if anything to avoid the arguments that would have ensued every time I brought the subject up of outside help.
I suppose the main reason for this article and to point out and share all the difficulties I had in my own experience as a caregiver, is to perhaps give some kind of guidance to someone who is may also be facing the possibility of becoming a caregiver to an aging parent, and I'm hoping that you won't face the same problems as I had. First, of all, I was at least lucky in this regard, that since I didn't have my own family to raise I wasn't torn between my obligations of taking care of a spouse and/or children and of taking care of an aging parent. But I'm the exception, as this will not be the case with most people.
Despite all the hardships and demands on my time in taking care of my mother, I did manage to have some quality time out for myself on a daily basis. This is most important for any caregiver to prevent complete burnout and stress. Since my mother wasn't a complete invalid and was mobile, I took time off, usually by going out for a few hours, whether to do my own errands, or just simply take a refreshing walk, just to have that time to myself. I made sure I didn't neglect my own needs entirely and I also made sure that I had proper rest, sleep, and fulfilled my ow nutrition needs. Once my mother was able to eat solid foods again, I also had the benefit of the Meals On Wheels program which made daily home visits with a healthy, nutritious, balanced meal for the day. This gave me a little time off from constantly having to cook all the meals for my mother.
It's almost ironic, that now that my mother has passed away, that it is only now that I'm finding out about programs geared for the caregiver, such as outreach programs and support groups that will help the caregiver be in contact with other caregivers so its members can vocalize the problems facing one who is a caregiver; this in itself can be therapeutic as knowing that others are going through the same concerns and stresses will make a person not feel so alone in this time-consuming and stressful new role that has been placed upon them. One can find support groups usually either in one's community, or one can even do a search on the internet. One really great website is Caregiver.com, which even has a discussion forum where people can discuss their challenges as a caregiver, and one can subscribe to their bi-monthly magazine, appropriately called "Today's Caregiver".
Of course, there may come a time where it may become just too much for the caregiver to continue helping and providing entirely on their own their care of their aging parent, especially if their medical needs worsen, and this is when outside resources are a must. This may be anything from seeking the benefits of having a visiting nurse come to the home, to maybe having their parent go to some kind of adult day-care center, or perhaps short-term nursing home stays. This will give the caregiver some genuine time out for themselves so they don't have to take on all the responsibilities on their own. Finally, of course, may come the time, that one may have to think in terms of placing their parent in either a hospice, a qualified permanent nursing home or assisted living homes.
I hope this article will benefit anyone who in now facing the problems of becoming a caregiver to their aging parent. I invite the reader to visit any internet resources about caregivers, I have only listed two, but there are so many other websites that will be beneficial to the caregiver. All I know it that I sure wish I had known a lot of this material when I had taken on the role as caregiver to my mother.
Sources and information about caregivers:
1).Caregiver.com
An excellent resource and includes a discussion forum and a bi-monthly magazine one can subscribe to, plus and e-mail newsletter:
http://www.caregiver.com/
2). womenshealth.gov
This website defines exactly what a caregiver is, and also defines caregiver stress and how to get help for it.
http://www.4women.gov/faq/caregiver.htm#e
If one does a general Google search one will find a lot more resources to either help the “caregiver” or to even find caregivers that can help out.
