D is for Dementia

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It’s been a while since I’ve blogged anything other than a book review via Goodreads.  It’s pretty much a clue that I’ve been overwhelmed by life when all I want to do is lose myself in book after book and I don’t even get any of my own writing done.

Things around the Compound have been interesting.  I knew that having my grandpa move in with us would be difficult.  It was hard before he moved in because my mother and I were the only people in the family who were regularly taking care of my grandpa.  Doing so meant driving a good 20-30 minutes one way from where we were living to where he was living.  Trying to get anyone else to help out was basically a joke so we did it ourselves.  There was even a time when we came home early from vacation because no other family in town could check on Grandpa for us just to make sure he was okay when we were unable to reach him by phone.

When we moved into a bigger home that could accommodate him as well, it got rid of all of the extra driving between our house and his apartment.  It also ensured that he wasn’t alone all of the time and would be able to have daily interaction with people instead of what he was getting in his apartment (which was basically if my mom and I didn’t visit, he was alone… every now and then someone would stop by for a few minutes but those moments were far and few between).

Having Grandpa in the house means a lot more than just an extra roommate though…  A lot more than I think many people understand.  He turned 97 years old yesterday and although he’s still pretty amazing when it comes to things he can do on his own, he’s also got a whole list of other things he simply can’t do anymore.  He’s also regressing regularly and finding out that things he had been doing just fine until recently aren’t possible anymore.

Dealing with Alzheimer’s/Dementia is incredibly hard to deal with on a daily basis.  It’s kind of like having an adult in your home who sometimes acts like an adult and other times acts like a preschooler.  Except when they’re acting like a preschooler they truly don’t see what’s wrong with it and think it’s perfectly okay.  Gramps recently spent fifteen days in the hospital due to pneumonia, sepsis, shingles and a handful of other issues… on his first full day in the hospital he spit a half chewed carrot across the room because he didn’t want to chew it.  At home and in restaurants if he decides that he doesn’t like something we’ve given him to eat, he leans forward and spits it out onto his plate or the table.  Sure, it can be humorous at times (having a sick sense of humor is key when living with dementia in the house), but it’s also quite frustrating and very, very sad. 

He can’t always remember if he’s eaten a meal, so we have to make sure that he does in fact eat and that when he’s eating he’s only eating the foods that he’s allowed to eat due to his Congestive Heart Failure (CHF).  He can’t take a shower on his own without risking a fall, so he has to be assisted with that.  He can’t always use the bathroom on his own either, so again he requires assistance and by assistance I don’t just mean helping him get to the toilet.  He can’t understand that everything isn’t instantaneous like when he’s cold he expects putting a blanket to solve it immediately or if he has a pain that Aspercreme should make it stop on contact.  He forgets that he’s supposed to be using a walker and gets up to stumble his way into another room but can’t remember why he got up in the first place nor why he doesn’t have his walker with him.  Taking care of someone with dementia is a non-stop process.  If they’re on the move, you’re on the move.  If they’re making too much noise, you know they’re into something.  If they’re making too little noise, they’re probably into something as well.

When he wakes up at 4:30 in the morning calling out because he’s not sure where he is, it’s us who have to deal with it.  When he swears up and down on a daily basis that the ketchup is “rancid because it’s from 1957” and can’t understand that the 57 in Heinz 57 is not a year but a brand, we deal with it (we switched to Hunts by the way and magically the ketchup is no longer rancid).   When he’s asleep in his living room in front of the tv but then swears that it’s too early for him to go to bed if it’s before midnight, we deal with it.  When he can’t open the bottle of root beer and decides that maybe banging the bottle against the counter will help, we deal with it. We deal with so incredibly much and for the most part we do it alone.

Actually, I don’t have to deal with Grandpa Duty nearly as much anymore because since he’s moved in with us he’s become my mother’s full time job.  She was unable to go to school anymore to finish her nursing degree while caring for him and since he got out of the hospital she’s unable to work now too.  She’s home with him 24/7 while I at least get a break to go to the office for forty hours a week.  It’s not much of a relief though because the whole time I’m at work I’m thinking about how crappy it is that my mom is at home with Grandpa all the time and doesn’t get a break.  I hate that she’s had to put her life on hold to care for Grandpa.  I know that she does it because she wants to, because she loves him, and because no one else will… but it still sucks to have to do it alone.

I think that when he moved in with us the family thought, “Oh good… he’s with family so we don’t have to worry.”  And yeah, that’s true… they didn’t have to worry like they did when he was living alone.  However, I think that what many family members have gotten wrong is that Grandpa living with us doesn’t mean that we need or want to do everything for him.  There’s only so far a “You guys do such a great job with Grandpa” can take us.

We can still use actual help.  And yeah, we’ve heard “All you have to do is ask…” from many people, but the truth is, we have asked and gotten nothing except excuses about why no one could help.

For a while before he was sick, we were able to leave Grandpa alone for a few hours at a time which helped tremendously.  But now he pretty much can’t be left alone at all.  We would love to be able to go grocery shopping without having to bring Grandpa along every time or go solo while the other stays home with the old man.  We would like to be able to go out and have dinner in a restaurant and go to a movie or go do something fun for a few hours.  I get that people are busy… but we used to be busy too.  Our whole lives have changed with Grandpa living with us.

We used to have Mom & Daughter fun, or go pick up the Monster Kids and spend hours away from home doing stuff with them.  But now we don’t because we can’t.  If we get the kids we have to do something that Grandpa can come along for (and take two cars because we won’t all fit in one), take the kids to our house so that Grandpa can be there, or just one of us can go do something with the kids so that one of us can be home.

When he was in the hospital, it was extremely stressful because we didn’t know what was going on most of the time and his health was on a crazy roller coaster going up and down every day… But you know what?  It was also kind of a relief at times too.  Not because he was sick, of course, but because our nights weren’t as limited.  We could leave the hospital and go to dinner somewhere other than Grandpa’s favorites McDonald’s and Culver’s.  We even had margaritas and saw a movie on Valentine’s Day.  Mom didn’t have to stay up until midnight every night because Grandpa refuses to go to bed before then and can’t go to bed on his own.

It’s good to have him home, it really is.  I’m glad he’s doing better-ish and that he’s making some improvement.  I’m glad he doesn’t live alone anymore and that he’s not stuck in some old folks home where no one would visit him regularly.  I love that I’ve been constant in his life enough that he hasn’t forgotten me yet.  I just feel like people have no idea how hard it is to do what we do every day, what my mom does the bulk of.  And frankly, it pisses me off that he’s got this great big family that doesn’t bother to make an effort to see him or help out.

My mother’s cousins who live nearly an hour away came to visit Grandpa in the hospital and yet there were immediate family members in town who didn’t come up even once in the two weeks he was there.  How is that okay?  I was pleasantly surprised though by the people who did come to the hospital not just once but multiple times while he was there.  That was a really, really nice thing that was much appreciated especially by me since I was unable to be at the hospital to support my mom like I would have liked to be.

It’s just sad to me that our family is lucky enough to have a 97 year old Grandfather who is still alive and can still tell great stories.  A grandfather who loves his kids, grandkids and great grandkids yet 98% of the time he only sees the two people who live in the house with him.

The night he was admitted to the hospital his blood pressure was so low that he could have died and had they not put in a central line to pump medication directly to his heart, he probably would have died.  We all assume he’s going to be around for a while, his big sister is 102 years old and still going strong… but the truth of the matter is that we never know what’s going to happen.  So why waste the time you have left by putting him off and making excuses?  Put on your big kid panties and visit your Grandpa!   Be an active part of your family instead of just seeing each other on holidays or when someone is in the hospital.  And for crying out loud, lend a hand every so often to help the people who do the literal dirty work of keeping him safe, comfortable and taken care of.  Wouldn’t you want that if you were him?

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One response to “D is for Dementia

  • Felicia

    I applaud you and your mom I know first hand the strain of taking care of a person with Dimentia because my mom did it for Granny for almost 16 years with very very very little help from anyone outside of me and my Dad she 2 put her life on hold Ppl don’t understand the total sacrifice so hang in there there are times when u will be angry, frustrated, feel hopeless yet surprisingly enough there are many more times that u r just grateful tell Aunt Ruth I sincerely respect het choice because she too couldve chosen to ignore him wish I could say it gets better but do try and get her to take time for herself even if it’s simple as reading a book or going to Starbucks to unwind she needs it andxYES pick up the phone (eventhough) u shouldn’t have to and say look we need u to come sit with him fir a few hours they will make excuses but they can’t say you didn’t ask love u cuz….felicia

    Like

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