Back a couple weeks ago, I vowed to be as honest in here as I wanted to be and now is the time and here is the place.
The situation at home with my folks seems a bit better, or quieter, rather, than it has been. I was having a hard time at first dealing with all of it at once and well, rather than try to explain what was bothering me, I shall just throw out a big bone now. Below is a copy of an entry I wrote back in March, but never published. I just copy & pasted it here ’cause I’m lazy and mostly ’cause it is hard to re-tell what I felt at the time when I wrote it.
March 15, 2000
My dad had a car accident last year (a year ago this month, to be technical). He became unconscious and his car slid into oncoming traffic on the other lane of a street near our house, on the way home from work one day.
Because of him not being ‘awake’ when it happened, his body did not tense in anticipation of an impact, and lived through it. Had it been the other way around, he would have surely died. This is what the investigating officer told my mom.
He was in the emergency room for several hours before we could see him, and when we did we were relived to find that he had been awake and was feeling OK, having only suffered a few scrapes and bangs. The doctor ordered an M.R.I. and complete x-rays to be sure. The doc’s x-ray results showed dad’s pacemaker had slipped lower onto his chest, from where it was originally sutured (they just tie those things on to tissue, it wasn’t like an implant). They didn’t know if it was because of impact from the accident or not. We did find out that there was no heart damage or cardiac tissue changes which would indicate a heart attack.
My dad has been out of work on disability since the car accident, because we will never know if the accident happened because he a) fell asleep, b) had a seizure, c) had a diabetic seizure or reaction. He will probably never work again, so he is basically retired. Yes, he is getting his pension payments, so $$ is not a problem for my folks right now.
Over the last couple years, my family has noticed alot of gradual change in my dad’s behavior, which, to the outside observer, would seem like mild depression, or just plain lethargy, burn-out, etc., for whatever reason.
The results from the M.R.I. dad had after the accident showed some significant differences in dad’s brain scan, where there were things missing in places there should be. Come to find out dad had some brain atrophy (tissue loss/damage). Well after yet some MORE testing, they have figured out that he is suffering from an uncommon form of dementia called Pick’s Disease, of which there is little to no real medical cure or treatment.
For those of you who don’t know, there are like, five known types of dementia, one of which is alzheimer’s disease. The difference being, that with alzheimers, some brain functions can go away and sometimes come back (memory, etc.), but with dementia, once a person stops doing something like remembering things, pronouncing words correctly, etc., that part of the brain physically dies. It shrivels up and goes away forever.
Dad gradually began to act entirely different, very childlike in character, and needs a structured day to day life. Much in the same way as when you have children you have to have a bit of structure so that they can learn and grow and respect their parents and household rules and such.
Since all this has been going on, he has also been wanting to sleep all day, or do nothing at all but sit around, or try to go outside and smoke cigarettes (none of which are healthy, and don’t help any). So we have to literally get him doing things, even if it means helping around the house, reading a book, engaging in conversation or whatever, so that he does not lose touch with everything and go to bed. Of course we would not force him to do these things if he was incapable; on the contrary; he is entirely capable, he just needs to be cajoled a little into doing them.
Once he gets started doing something, anything constructive or worthwhile, he feels okay, mentally and sometimes physically.
At this point in time, we don’t know whether his will progress into alzheimers, or stay the same, or even just get worse but not progress into alzheimers. It’s very difficult to tell because all the doc’s were able to detect from the tests was that there was some atrophy in the brain, and that lots of people who eventually developed alzheimers showed these same losses at first.
On top of all this, Dad has had dealt with two heart attacks, one in 1987 and one in 1991, the last one resulting in a triple bypass heart surgery and the addition of a pacemaker. Soon after his first heart attack he developed a minor case of diabetes, which he is now controlling hypodermically with insulin. As a rule, Dad was very good about taking his meds for heart disease and diabetes until about two years ago, when he stopped altogether because they made him feel sick.
Well everyone w/diabetes knows that one of the things you need to do is build up a tolerance for the drugs because if you don’t, you have mild side effects, that cause you to not feel good. In order to build up the tolerance you need to take them regularly. Needless to say, he had not gone that long w/o the drugs because we noticed that he had stopped.
Here’s the kicker: my dad is only 55. He has not lived that hard, was never an alcoholic, didn’t work a hazardous job, or anything like that. So the only precursors to him feeling this way is the heart disease and the diabetes. My mother, on the other hand, is 52, and has never felt healthier in her life. She is very active in the community, she is a councilperson for the city she lives in, she ran for mayor last year, she is quite involved in alot of civic goings-on. To be happy, she will always be a busy person. It is in her blood, it’s her livelyhood. This will stop soon, and she has already gradually stopped doing some of these things, because they keep her away from home.
My mother has been almost forced to retire as well, since she cares for children in her home, it has become necessary for her to stop working in order to focus all her attention on helping Dad. Also because of his sickness, he has displayed some behavior which she felt was inappropriate around the house during her workday. My poor dear mother is at her wits end, because although she is a very patient and loving person, she cannot deal with this on her own.
In order to keep doing what makes her happy she will need to either get some respite care (in-home) for Dad, or he will have to go to a home. He is in no mental shape to be making this decision for himself, he thinks if he goes into one, they will let him sit around all day and do nothing and smoke non-stop.
Number one, the law in my state does not allow smoking in these kinds of facilities, and two, if he does in fact go into one, it would of course be one where they have some daily structure. Assisted living, but to a degree. He definitely is capable of structure, with some kind of supervision, but he is by no means able to live and maintain his own room or apartment or whatever they have for people there. Also, there is the problem with money.
If they put Dad into one of those places, they pretty much have a handle on all your money, and they almost only leave you with the shirt on your back.
My mother does not know what to do. She has consulted some legal advice as to what extent of the law some of these facilities abide by, with regards to costs, etc. She also needs some support, from others in her situation. I myself love both my parents with all my heart but have no idea what to do.
It is stressing me out when my mom calls me to yell and cry and get upset about it because it’s overwhelming. Jeez…I can’t even deal with my own problems, small as they are. It sometimes makes me want to cry. I have been going online (to tie up my phone line) a lot more, or just not at home this past two weeks because I am afraid of how I’ll handle it when she calls. I don’t know what to tell her. I feel bad about it too.
I know this seems selfish but I am very very very afraid of the future and am not ready to start caring for my folks. I don’t even have children of my own yet, let alone have any career direction, and have not really even ‘found myself’ yet and this is all happening too fast! I have to cancel stuff or put it off so I can go be with my dad so my mom can attend to her civic or volunteer duties. She does sometimes feel guilty about her devotion to these things but what can you do? If you are committed to the community, you have a certain amount of obligation, but at the same time you want and need to be at home where there are other issues.
I am not the only one this all is weighing on, my sister has a family of her own, a husband of two years and a four year old son. She gave him her two cents on Sunday like I did. She feels like she wants to help mom but doesn’t know how or feels like I do.
Flashback…
Before we really *knew* what was wrong with dad, there was a lot of dramatic changes in him, prior to and after the accident.
It sort of hit a turning point in March (at least from my point of view, Mom has dealt with this before). Mom and Dad both quit smoking cigarettes many years ago, when my sis and I were still small. A couple of years ago, Dad started up again, out of the blue. My mother had developed terrible asthma shortly after she quit, and cannot even tolerate the smell of cigarettes on people’s clothing and hair, and just being arount that makes it hard for her to breathe, so of course, there is no smoking in my folks’ house.
Anyway, last year on my parents anniversary, he promised to quit. He kept his promise until spring and then quit again before Christmas in ‘99. We figured out that he is so childish because he was quitting because it was cold outside, and he didn’t want to be outside, thus an easy way to quit smoking.
On Sunday, my mother and sister and I met at mom’s so we could attend our cousin’s baby shower. We were planning on taking Dad along and he was going to go to our very good friends’ house to visit while we were at the party. When we got there, my mom and dad were in their bedroom, talking about his sneaking money from her and using it to buy cigarrettes. The day before, my sis was over at mom’s visiting and she left her purse and cigarette case in the car. My dad went out there and took a few of them from her and hid them, so they were also discussing that incident.
My sis and I we were getting ready to leave, waiting for mom out in the front room of the house when she left the bedroom and went to go freshen up in the bathroom. When my dad left the bedroom, he went outside and proceeded to smoke one of the cigarettes he took from my sis, but not before he chuckled and boasted that he was about to do so as he was going out the door. Not knowing the resolution of what they were discussing back in the bedroom, cause we couldn’t really hear, and also because we felt it was none of our business, my sister and I said and did nothing. I guess since it is not our house, we felt there was nothing to be done about it, and perhaps mom said he could go out and have one.
Upon hearing me tell her that Dad went outside to smoke when she asked me where he was, mom ran out into the yard and tried to go up to him and stop him. He walked across the street into the schoolyard across the street and mom went after him and was telling him to come back home. I went to the door and tried to calm her down, said something about making a scene and she yelled and told me that she wasn’t making a scene, and even if she was, had every right to be, and she came back in the house.
Dad followed her in, probably because she yelled so much at him to get back home. We all were upset because mom must have had enough. She was crying and yelling about how he had just agreed not to do this to himself, and doesn’t he love himself or us enough to not do this? My sis started in yelling at him and crying because she was mad and upset and scared and confused, I was crying because I was so overwhelmed at the site of both of them crying and yelling and also because I was mad and also afraid for my dad since he seemed pretty smug and nonchalant about the whole thing, and also because I hate to see my mom in such a state.
My mom asked him if he really wanted to do this to himself? Did he really care to trade us for a cigarette? He thought about it for a second and said yeah, he would. My mom got pretty sore at that answer even though she knows that he can’t always keep up a normal conversation and he may have not really thought before he spoke.
After all this, we got him to promise that he will stop this stupid behavior and stop trying to kill himself, and he did seem pretty sorry and he said he loved us and didn’t want to make us mad. We left, all somewhat calmed down and more reserved, and when my sis and mom got out of the car to run into Target for a gift bag he asked me for a cigarette. I give up.
That was then. There have been better days, and of course I think it will keep going okay for awhile but then what do I know? I could be wrong.
A couple of weeks later, I went over to mom & dad’s to “visit” with dad while mom went to a meeting and not fifteen minutes after she left, he went outside and started down the street.
He was headed to the gas station across the highway to buy cigarrettes, I was sure, because mom had warned me that he tried to do the same thing twice earlier that week. Let me tell you that my dad is not capable of driving a vehicle (anymore) or keeping a job or should even be leaving the house alone because of his condition.
He was too far gone for me to chase him and I didn’t want to aggrivate or scare him or anything so I called the cops. Damn right I did. My folks live in a small town and everyone pretty much knows everyone so of course the cops do too, and are very understanding and accomodating. Luckily they picked him up and brought him home. Since the entry above, my mom has been retired one month ago this week & they’ve been spending alot more time together and all seems okay.
For now..
Same day, different year..
Other posts on this day:
and is very homesick right now (her family is in Sacramento, CA), and a couple others, John and Phyl, I’m thinking of you guys…hope you are o.k.
When my four year old nephew, Brandon, was a baby just starting to talk, I was always telling him he was goofy. He couldn’t say it right and it was hilarious at the time. He knows how to say it right now but he still says it wrong just for old time’s sake.
Then he picks up the bowl and drinks from it, creating more puddles on the table. Puts the bowl down, bends and tilts his head toward the table and slurps the puddles from it, all while I am watching him. He licks his lips and face in that all-around circle tongue motion that kids seem to have down pat, and after a moment, belches loudly, and then gives me the sweetest look any kid ever had on his face.