Busy, busy Saturday for the family. I think maybe Sophie felt left out. Once we were all back home, she followed us everywhere. Couldn’t settle down. One minute, she was in with me and mom. Next minute, she was laying down with a very tired baseball player. Then she was in the family room making sure Peanut didn’t make any mistakes on her homework.
I thought she was going to end her day on the foot of mom’s bed (where I was sitting) watching a movie. But my daughter went to a dance master class this morning and decided to come in and show off her turns. Sophie just couldn’t pass that up!
Notice how she is watching at first. Then watching a bit more closely. And finally, up and chasing her tail…the Sophie version of a ballet turn, I guess! She is the most interesting dog ever!
Another Friday morning…this one’s moving slow. Mom said “please don’t make me get up early in the morning” and she meant it. Today’s been all jacked up with subtle differences in our routine. And one of those is mom’s very deliberate, very slow, very relaxed pace.
So, I’m going to go ahead and join up with hundreds of other writers for Five Minute Friday with our lovely host Kate Motaung. Today’s prompt is HOLD. So, we gather our thoughts, set our timers and write like the wind for 5 minutes. No editing, no overthinking, no holding back. Just pure, joyful, abandoned writing in a community of other writers. It’s pretty fabulous!
So, in the time it will take mom to put on one tennis shoes….HOLD
I’m not sure what I thought when we decided to move mom into our dining room to live, but like so many other decisions in my life that are for the good of my family – I probably didn’t think it all the way through. It would have done no good. I was going to do it anyway!
So, we are at the 18 month mark of living up-close and personal with Alzheimer’s and what I find myself saying is “my life is kind of ‘on hold'”.
I’m still living. I still participate in things. I still get to my kiddo’s activities. I stay in touch with my friends. I am even trying to study for a new license that will provide me with an exciting “chapter 2″ career when the time is right.
But I’m also tethered. To my home. To my mom and her health. To the constant changes that are a daily part of Alzheimer’s care. To a much tighter budget (which tethers me to the kitchen and a jar of peanut butter more often than I’d care to admit!). To pills and prescription refills and doctor’s appointments and home health aids and nurses and a constant battle with the Medicare system.
And the balance I am finding between the two is where I do my day to day living. I may not be able to run and grab coffee with a friend at the drop of a hat, but I get to pick my kids up from school every day. I may not be able to afford to “grab something for dinner” when things get hectic, but I can answer the questions that my kids have about their homework while I’m making sandwiches. I may not be able to learn more about my mom’s childhood or to try and heal the wounds of a non-traditional mother-daughter relationship, but I can tuck her into bed each night and know that she is safe and happy.
It’s a balance. My life as it would have been if mom weren’t sick and helpless and fragile and living with us is on HOLD. Luckily, the background music is pretty darned fabulous!
Full of laughter and stories and struggles and strength and bonding. MUCH better than being on hold with the folks at Medicare for the 3rd time in 6 weeks!!!
Whew, that was fast…considering as soon as mom realized I was doing something other than pestering her to speed it up a bit – she went to warp speed!!
So, last week I discovered through my friend Paula at Smidgens, Snippets & Bits a linky called Finish This. There were several reasons I felt compelled to join in – Kentucky, another Lisa, Fort Worth, TX – but really – I liked the “fun” element. The prompts can be as serious or silly as you want. They are designed (I think) so those who join in can get to know a little more about each other. And, I have no idea how everyone else approaches this, but I am going to take a fly-by-the-seat-of-my-pants approach and have some fun with this. A little escape from Alzheimer’s!
So, here we go…let’s FINISH THIS!
1. I am the type of person who…
Is empathetic off the charts. I feel pain when I watch a football game on tv. I cry for the other team even when my team wins (unless it’s the Steelers…and even then, I feel bad, I just mask it with sarcasm!). I hold my breath when I watch any kind of competition show – especially American Ninja Warriors (my mom’s current fave show – how about that?!) I get so caught up in the characters of books and movies, I find myself worrying about them (and yes, I know it’s not real) after I’ve finished the book or watched the movie. I find it so easy to see all sides of any story. I always give the ‘benefit of the doubt’ and ‘a second chance’. Now, I am cynical as well, so I may give the benefit of the doubt because it’s the right thing to do and my deepest soul tells me to, I will still roll my eyes and be totally aware of all the things that could have really happened. Can’t help it! I put myself in other’s situations far too often, but I don’t know any other way. It’s like I can sense what my friends are going through. I can also be quite tactless…but I think that is a product of how I was raised. I’m from the North, living in the South – so what is considered tactless here is just normal conversation where I come from. It also comes from being a bit afraid of lying – I would never be able to keep it all straight, so I just come out with it…and can sometimes be tactless! Luckily, most people can tell that I would never intentionally hurt someone’s feelings and it is very rare that I am mean…and when I am, I have incredible guilt…the circle of empathy, I guess!
2. My favorite joke or riddle or funny is…
I know, I know…it’s so pitiful, but it makes me laugh! And as someone creeped-out by clowns, I have no moral dilemma with this one (because I refuse to think too much about it!)
3. All that really matters is…
My family. My faith. My humanity
And there you have it! I’m amazed that my daddy told funny stories for a living – I know just one joke! Thank goodness, after 15 or so years, it still cracks me up!!! I can tell a story with the best of them, but jokes have always been just outside my skill set!
The Childlike Qualities of Alzheimer’s
I am feeling organized! Funny, how living with someone with Alzheimer’s can turn you into a list-making, clock-watching, detail-obsessed individual! Mom needs her routine, even though she has no idea that she needs her routine.
So, anything out of the ordinary requires a LOT of planning, organizing and double-checking! And that is all me. And even though she doesn’t actually put anything in it’s place, she expects it to be there. Always. And that is all me too.
So, I got busy with my Cosi calendar and added everything I could think of to keep me (and mom) on track. Bling! (that’s my alert!) – it’s time to get ready for One Word Wednesday!
I can’t believe how empty the jar is getting…It seemed like 52 words – an ENTIRE YEAR’s worth of words was sooooooooo many. But that was 25 weeks ago! Nearly half the year has passed. Seems almost impossible.
So, here we are on week 25, writing about CHILDLIKE.
I remember what I was thinking of when I wrote this word down in my journal as I was considering One Word Wednesday for this site. I was thinking about the gentle prompting that was required. The genuine smiles that mom used to smile at Sophie and flowers and snowflakes and cartoons. The way mom used to clap her hands with joy over something funny on tv or getting to go for a car ride…
I read a lot in the beginning of my caregiving journey about Alzheimer’s patients ‘reverting’ to a childlike state. Or their behavior being likened to a child’s behavior. I don’t think this was on a medical site – I still find those too cumbersome (imagine back when I was a newbie!). Who knows where I read it. I just know at the time it made sense.
It still makes sense…in a way…but it’s not seen through rose-colored glasses anymore. There are no cuddles – there is distance. There are no sweet baby feet – there are senior citizen, thick, giant toenails. There is no cooing – it has been replaced by murmuring and grumbling and empty sounds. She cannot learn and grow like a child. The learning is gone.
So, even though she exhibits some traits that I saw in my infant children. The laser-focused need and call for food, sleep, warmth and the potty. Much of her joy is gone. Her wonder.
Of course there are exceptions. When I rub her back – I think I could call that a “coo”. When I take her new places – she stays as close to me as she possible can – totally dependent. Her nighttime smile is still CHILDLIKE Once she is all the way in bed, just before I turn off the lights, she always smiles and says it’s been a nice day as her eyes are closing and she smiles and it’s so innocent. We have our share of uplifting CHILDLIKE moments.
Some are not so uplifting. Today at dinner she asked me if her momma was coming. I used to try and explain it to her. But now I just smile and say, “I’m not sure….” and let it trail away. Can you imagine thinking your momma is still alive, which clearly means you think you are much younger than you are, living in a time and place long past? How neglected you must feel. How abandoned. And scared.
Those are the CHILDLIKE moments that I struggle with…the ones where there is no logic or right answer or comfort that will work. That will make it better. Luckily, she forgets that she is scared or missing someone or needing something. Or she takes a catnap and wakes up in another time or place in her mind. Or hungry…because these days, hungry trumps all the other cards in the deck!!!
I hope you can find time to link up and share your take on ___ I have been saved by this caregiving, blogging, nurturing, advice-seeking & -giving community. Join in!
So, here we are on another Tuesday. The kids are in school. My hubby’s at work. There is not a single doctor’s appointment on the books! And mom is humming contentedly on the big red couch with Sophie at her feet.
I am so happy to see her this way. She had a rough weekend (didn’t we all?). And there is no denying her decline. Words have been so difficult for her to find in that Alzheimer’s-riddled brain of hers. Simple words. Not names or places or actors or anything like that. Pills. Coffee. Hand. Shirt. But, bless her heart – she is not letting that stop her! She is finding ‘alternative’ words and ways to communicate…
…and that brings me to today’s Alzheimer’s Top 10!
Top 10 New Mom Behaviors (in the past 30 days)
10. Tapping on the rim of her coffee cup or iced tea glass 5 times (counting softly to herself) before she drinks it with her meals
9. Putting on bright red lipstick BEFORE she goes to bed every night – it’s a site to behold, but it makes her so happy! (It’s killing her pillowcases…oh well…)
8. Refusing to close the bathroom door because she it makes her scared – sad and inconvenient, all at the same time
7. Every piece of clothing is a “dress”. None of us wear dresses, but she seems to have lost the words for shirt and pants, so she calls everything a “dress”. And any of my old t-shirts with writing on them fascinate her and she will read them aloud again and again, asking all the while “what does your dress say?”
6. If anyone says the word teeth, she promptly pops them out of her mouth and presents them and smiles as big as she can
5. She refuses to eat macaroni and cheese. It has always been her favorite meal (the Kraft dinner kind) and now she just pushes it around on her plate and mumbles about how “this stuff isn’t very good”…I tried 3 times and I give up. Too bad, that was always sure-fire!
4. She has forgotten what a kleenex or paper towel or napkin is. So she blots her lips and blows her nose on anything handy. Sweaters, cloth napkins, the collar of her shirt, the dog, a throw blanket, the placemats and on one unfortunate occasion – her peanut butter and honey sandwich…sigh…
3. She is obsessed with chocolate pop tarts. She says “you know what I’d like?” “I don’t suppose you have anything sweet?” and she is not satisfied until she finally gets a chocolate pop tart! She breaks it into 8 pieces on her paper towel or plate and as she eats each piece she says “This is just about the best thing I’ve had in a LOOONGGGG time.” And poor Sophie never gets a crumb!
2. She walks to the back door and stands there talking aloud about the weather. She doesn’t want to GO out and she isn’t really interested in what the weather is actually like. She just seems to want to stand there for 5 or 10 or 2 minutes and give a brief weather report.
1. She has a new compulsive thing she is doing with her socks and sneakers at night. She takes off one shoe and one sock, then she turns the sock inside out, flattens it out, tucks the bottom half of it VERY neatly in her shoe, lays the other half across the laces, then tightens the laces, and ties a perfect bow over the sock. The she places beside her basket. Then she repeats the entire thing with the other shoe and sock. All the while she asks to no one in particular “Is that right? is that right? I think that’s right. Is that right?”
I remember 8 or 9 years ago when mom started swearing for no reason. Great big, sailor-worthy cuss words. It was bizarre and frustrating and an education for the kids. And there was a brief period where she was man-crazy and making some inappropriate comments about the newspaper ad male models (ick). Those were the worst “new things” that came with mom’s Alzheimer’s and they disappeared and were replaced by new things.
I am sure this list will be short-lived as well. I wonder what will be next?!
Saturday is coming to a close. The house is quieter. Homework is stacked back up to finish tomorrow. The dishwasher is humming. The lights are low and mom is finally in bed.
She’s had a tough day and Sophie knows it. She is not a snuggly dog most days, but if someone is sick or feeling down, she is never far away. Mom doesn’t like Sophie to lay on her bed…any movement can really irritate her arthritis. And Sophie LOVES to lay on mom’s bed…but she’s also a “medicine dog”. So she lays as close as she can in case mom needs her. She’s a good dog…
Weekends are difficult for mom and her Alzheimer’s. I guess she’s forgotten what exactly weekend means. And there is no joy in a break from the regular weekday activities. You’ll never hear mom say “Thank Goodness It’s Friday!”.
But something is hanging on in her brain that makes her imagine or think or mumble or ask about what special activity is going on on Saturdays and Sundays. She is less contented on the weekends. It doesn’t help that it’s overcast today…such a downer for a non-Alzheimer’s person…and has put mom deeper into her weekend funk.
It’s funny (but not in the “ha ha” way) that mom is upset about the lack of activity on the weekend. She complains quite a bit about her appointments – whatever they may be. Perhaps she enjoys them secretly because they break up the weekdays. So, even though it would stand to reason that she would celebrate a day without those nagging appointments, she is down-right cranky.
And now that the kids are older – weekends are full of things that have nothing to do with mom. Sporting events and sleepovers and untraditional (for mom) communication with friends and homework and projects and lazy days on the couches or floors with headphones on. Meals are not eaten together, because it doesn’t make sense. I am not going to force them to sit down with us to eat lunch at noon when they’ve just eaten breakfast at 10:30 because it makes mom comfortable. Truth be told, she prefers it when it’s just the two of us. BUT, she doesn’t want them to be within eye- or earshot.
So, she’s been mopey. And I’ve been feeling guilty. I left her home with my daughter so I could go see my son’s first fall baseball game this morning. She didn’t get off her favorite spot on the couch and Peanut gave her a couple of really delightful snacks, but I still feel guilty. Probably because I assume it is contributing to how out of sorts she is. I also stopped to grab a pizza for Murph and i on the way home (at 2:15pm) and she has been asking about dinner since 4:00. I would die if I had to eat, so I made her a snack and put dinner in the over about 15 minutes ago. She is pacing. Back and forth through the kitchen. Shooting dirty looks at my daughter, who is lying in a pile of ridiculously bright blankets with headphones on, reading on the family room floor.
For those of you who know me, you may know that I have chosen to make the Family Room “off-limits” to mom. And it makes her NUTS! Usually she just murmurs about how this place is “going down hill” and “used to be so much nicer”, but today she is ramming her walker into the couch we put across the opening and trying to pick a fight with my daughter. (That’s why she has headphones on – no music – but it makes her feel better about not responding to mom when she is trying to pick a fight). She won’t test me usually. Who knows? Today may be the day that she goes all in and challenges me on this one. It’s really been one of those days.
And she’s upset about the neighbors not stopping by to visit. The neighbors across the street. Who are really nice, but they are driveway neighbors. We’ve never been in their home and they’ve never been in ours. And I’m just agreeing with her, since she is not about to let me change the subject. So, I say, “well, they are probably busy just like the rest of us” and leave it at that.
And we will probably get to do it again tomorrow. Sundays (even though we NEVER say it’s Sunday) are the worst. It’s the day she used to come to our house for the entire day. So, if mom gets wind that it’s Sunday, she spends the day either crying because her daughter Lisa (me) never comes to see her anymore or complaining about what an ungrateful daughter she has (also me). I think I may need to start drinking…or maybe I could borrow Peanut’s headphones!
Today is another Friday. The first Friday in a while where I feel calm. It’s overcast and sometimes that can make mom anxious, but today, she is peaceful. I am so thankful for moments of peace these days. Moments where coffee can be enjoyed. Lists can be made and checked off. Silence can be experienced and appreciated. Dogs can be spoiled and blogs can be written!
On Fridays, I, like so many others, look forward to linking up with writers all over the place for Five Minute Friday over at Kate Motaung’s Heading Home. She gives us a one-word prompt and we write. Just write. For 5 minutes. It is strangely exhilarating and freeing and energizing. And on this calm, overcast Friday, I am ready to write…
…how interesting that today’s prompt is READY!
I thought I was READY. We had talked it over. I had a picture in my mind. We READIED a room. We arranged a truck. We made all the necessary arrangements. We were READY.
Or at least we thought we were. Alzheimer’s has a way of cutting you off at the knees. It does everything in it’s power to show you just how NOT READY you are.
Alzheimer’s from far away – movies, books, acquaintances – is odd. It’s funny at times. And a little scary because it’s so hard to really understand.
Alzheimer’s from 1000 feet – a family member or parent of a good friend or former teacher that you see occasionally – is “Really?” Because that’s what you are secretly thinking. That can’t be real? Are they trying to get away with something? How stupid do they think I am? Is that what my mom called ‘senile’? Or a ‘senior moment’?
Alzheimer’s in your dining room is AWFUL. AND UGLY. AND UNBELIEVABLE. AND SOUL SUCKING, GUT WRENCHING AND HEART BREAKING. And there is no way to be READY for it.
The things that happen. That you experience. That you have to deal with. The new lessons and tips and tricks that you need to learn or improvise or make up on the fly. The questions you get asked and the conversations you find yourself in the middle of. The strange and unexpected trip into Alzheimer’s World. How are you supposed to get READY for that?
Don’t ask me – I have no idea!
Because I thought I was READY.
I guess you can never be ready for something completely new. For something so few of us ever get to see up-close and personal. For something that has been kept in the dark for so many years.
But God knew I was READY. Maybe not for Alzheimer’s in my dining room. But READY to care for my mom. READY to make our home her home. READY to train up my children in what it means to be selfless and kind and gentle. READY to find humor and beauty in awful circumstances.
I’m so glad He’s got me. He’s got my family. And I’m sure, my mom.
So, even though you can never really be READY in the way my human heart and mind like to be prepared. God can lift you up to handle anything.
Today I had to take mom back to the doctor. Just a follow up visit from the last visit and the X-rays and the wrist and the hip thing. Just a follow up. Which meant I had some time to plan out a few questions.
And I did not like the answers I got.
I realize there is no hope for someone with Alzheimer’s. I realize her mental capacity makes traditional treatments difficult, if not impossible. I realize the dementia makes many medications not work as they would on a non-Alzheimer’s patient. I get it!
But I had questions…
About her constipation. It’s severe. And I am doing what I know to do. Senecot every day. Miralax every evening in her water. 32 ounces (minimum) of water each day. As much walking as I can get her to do. And 2-3 prunes cut up in her jelly for her morning toast every day. EVERY day! And it’s not helping.
The answer – well…..some of the medications…..it’s very common in this age group…..well….
That does not help me – or mom!
About her pain. The pain meds they have her on aren’t working. Tylenol doesn’t make a dent. She’s had a narcotic pain reliever (which I only use on the worst days) that seems to help. But she might get addicted???? REALLY??? Who cares?! If it makes her not stay up all night crying out because of the pain in her hips and wrist from laying down for too long – I’m fine with a bit of addiction. How exactly would it matter in the grand scheme of Alzheimer’s? Someone please tell me????
Well…..we find in this age population…..an inconsistent reaction….might (might, really?) make the constipation worse….well…..
Her sleep in general. I have a family who needs to sleep. 2 school aged kids carrying full AP work loads at school. Who are involved in activities. And a husband who works his butt off and has one of those awful “never-the-same” schedules that make it tough to get enough sleep under the best conditions.
Well….that’s just part of the aging process…..we see it a lot….sleep aids and medications do not work on Alzheimer’s patients….in this age population….well….
And then – have you considered “placement”. Of course I have! But have you seen what’s out there for what would have to be a “medicaid pending” patient? YIKES! I have her on 3 waiting lists. Places close to home. Places where I have visited and felt comfortable. Places where I could see her frequently and still be able to do everything with my family. That’s why they all have big waiting lists!
I’m sure when you are a doctor who treats “this age population” you get numb to it. You become matter-of-fact about things. But to say “placement” in such a way as to suggest that all my problems would go away if I “put mom somewhere”. Honestly, I could almost hear him washing his hands of my questions and his responsibility to answer me with the word “placement”.
I’m sure he was trying to be helpful. I’m sure he has seen far too many families go through this. I’m sure he can tell that mom keeps backsliding. I’m sure….but I am doing the best I can and I was just hoping for a bit of help in the medical world. Help for the things that have nothing to do with remember anything. I just want her to be as comfortable as possible.
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