If I Weren't Here


If I Weren't Here

Looking after one another... Looking after one another...

A fellow caregiver posted a response to another of my blogs recently, asking if it's ever been spelled out and clear what Jack needs a companion/caregiver for. I had written that he "can't live alone," as the "in a nutshell" explanation of what's been determined by Jack, myself and his primary doctor.  Some examples, including "daily tasks of living," are:

- He can't get in or out of the bath by himself and is unsteady even in a shower with a shower chair, so he needs help with that. He receives help from me with some shaving and mustache and/or beard trimming on occasion, as well.

- He can't reach some parts of his body and needs prescribed lotions rubbed in.

- He can't cook alone in the kitchen because he frequently walks away from whatever he's cooking for long periods of time - he has no concept of how much time has gone by and sometimes loses time or forgets he's got something cooking.  

- He has been known to put a plastic plate of food into the oven (which I've caught before it was too late and have kept a souvenir of as a reminder of what he's capable of).

- Once when I was away caring for my mother, he was staying alone and ordered brand new kerosene heaters, then didn't properly trim the wicks and use them as directed, so he black-soot smoked out the entire house and nearly killed himself. He's lucky not to have burned the house down.

- He will put his cane down somewhere and minutes later he's wandered away from it, needs it and cannot remember or see where he put it.

- He looks for specific things and cannot find them, though they are right in front of him or on the shelf properly labeled for whatever the item is. I've labeled every shelf in both the pantry and the refrigerator in order to help him stay as independent as possible. Rather than cope and eventually find whatever it is, he sometimes screams in a rage and has a tantrum.  I've been encouraging him to just "politely ask for my help and I will gladly do so." If I weren't here, he'd rather go back to the bottle than solve the food challenge.

- He gets extremely frustrated and smashes, tosses, yanks or bangs things to destruction, then can't or doesn't fix it, clean up the aftermath, or he complains about the then-destroyed item which he needs (i.e. his dentures; replacement time). If I weren't here, he'd be stepping all on glass, without his dentures at all and would have a completely destroyed environment.

- He has (many times) left the door(s) to the house wide open even in the dead of winter, releasing heat and letting freezing temperatures and snow in. Because I'm here, I usually catch that and close the doors within minutes (except when he gets up in the night while I'm sleeping to go out to his truck for a drink or a smoke).

- Several times he has gone outside in ice and snow without putting his gloves on and while unsteady (usually because he's drunk), and fallen down in the snow unable to get up.  Because I'm here, I've seen his falls within seconds or a minute or two and have been able to get him up, into warmth and safe from hypothermia.

- He tries to self-adjust his medications and prescriptions, so needs someone to stay "on it" about what he's supposed to be taking and when, and notice when he's "off" and quickly discover the "why." ("I decided not to take this or that to see if I can get off of it."). He shouldn't do that, but he does all the time.  

- He will not, on his own, schedule or make an appointment to be seen by his doctor.  I have to do that or it won't happen. The last time he went to his doctor was months ago and only because I made the appointment, demanded it and he was scared because this was on the heels of one of those times he fell in the snow and could not get up by himself.  If he wants to convince himself that he's fine and wants to avoid another exam that will reveal what's really going on with him, he will cancel any appointment I've made and refuse to go either the day before or the day of the scheduled appointment.  In other words, his alcohol consumption usually dictates whether or not he's willing to be seen.  He likes to try to manipulate the blood panel numbers by laying off some alcohol for a few days to a week.  If he can do that, fine. If he can't (which is 99% of the time) he's not going.  Every time I find and throw out his alcohol, he just orders or goes and gets more.

- His incontinence issues make it difficult for him to, at all times, be able to drive himself any distance beyond a few miles; or he's got too much alcohol in his system to drive and/or is feeling weak and needs/wants me to drive and haul everything, etc.  If he has to make an appearance at, say, a high school reunion luncheon, he preps for three days prior then only eats a few bites of what he knows will slow down his colon before he will go.  His life, literally, revolves around his love affair with his addictions and habits.

- He does not properly feed himself and make sure he gets a balanced diet. He often needs someone to make and put in front of him a real meal, as opposed to the junk food, high sodium/high saturated fat items, chips, popcorn or candy he wants to live on.  If I weren't here, that's all he'd nibble on, for the most part.  I'm always relieved when I see him grab some sandwich meat, a piece or two of lettuce for a sandwich and some cheese. Thank God for cooking shows!  I've finally gotten him to try making some of the dishes seen on those shows.  I just have to make sure all the ingredients are here. Recently, I joined "Hello Fresh, and have all the ingredients and instructions for preparing three delicious, super-healthy meals for two per week.  We're making this a bit of a fun activity (a rarity), and my hope is that this will become a new habit over time.

- He cannot see (or doesn't try to see) the fecal and urine messes he makes between his bed in his room and the bathroom we share in the middle of the house, or on the floor and toilet in the guest bath by the door he goes in and out of to and from his truck/clubhouse, or what is either on the back of his legs or his pants afterward. He doesn't adequately clean up anything after himself, either.  He tries, though, and that's good.

- When he loses his balance and goes down (sometimes only down on one knee, and sometimes all the way to the ground on his back or belly) he cannot get himself up, even with a rail there and/or his cane.  I have to help him up. 

- If I weren't here, he'd have food left out all over the place, attracting all kinds of harmful, unsanitary and ugly "things."  He most often does not properly wrap leftovers or other foods he makes or wants to revisit in small amounts, etc.  If I wasn't here going back in and doing that for him, foods would mold and develop bacteria and he would either not notice or not care.

- He requires someone to manage the temperature he lives in (heat in winter, cooling in summer, etc.).  Otherwise, he'd either freeze to death or overheat.  

- He forgets to pay his bills, or even get his mail from the mailbox.

Jack appreciates prompts, which is a lot of what I do, in order to keep him engaged, somewhat, involved and doing for himself as much as possible but he would not do any of it on his own or consistently over any real significant length of time. He will sometimes rally when these arenas or deficiencies are brought to his attention when the subject occasionally comes up, but he can't sustain the "show" he puts on with tremendous focus for a matter of days or (at most) a few weeks. It's always just a matter of a little time before he's right back down again.

The sort of caregiving life I have seems to be a cross between being a companion, "CNA," sitter/guardian, housemaid, cook and shopper, bookkeeper, ombudsman, advocate, mother, intellectual sparring partner for debates and science discussions, and counselor/teacher, all interchangeably and to varying degrees as his state of health and interest ebbs and flows. I can't imagine what Jack's life would be like (if he'd be alive at all), nor do I know what I'd be doing, if I weren't here.

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Lillie Fuller

Sounds like you're keeping busy! I guess there isn't much Jack can do without someone being there. Thank you for sharing your story.


Thanks for the story, Wren. You certainly have your work cut out for you! I keep thinking of my cousin who passed away, how he would be now if he'd lived to an older age.