Hard Lessons in Caregiving

 Dementia is hard. It's a lonely place to be -thinking that no one visits and you never go anywhere or have anything to do. Not because that's true, but because you just can't remember your daughter's visit the week before; or the trip to the grocery store the day before; or holding a snake and touching sea creatures just an hour earlier. What happened before doesn't seem to matter as much as us, caregivers, would hope. What matters is what's happening in the moment. And in that moment of loneliness and abandonment, no one is visiting and there's nothing to do and nowhere to go. Nothing could have really prepared me for that punch in the gut every time Mom says, "I haven't been to the beach in ages" (we go twice a week), or "Thank you so much for letting me come. It's so nice to do something different" (we go out nearly every day). You hope that the effort your making as a caregiver has some broader contribution than just fleeting moments of good feelings, but I'm learning that it may not and that has to be ok. I had really hoped that there would be some sort of cumulative affect -enough good, positive attention and experiences would maybe, perhaps help her feel safe, loved, a part of a family. Apparently Alzheimer's does not work that way. 

Unfortunately, that's not a very fun lesson to learn for any of us. I had to learn it again last week! Carol has seemed more depressed and agitated lately so I'm making a conscious effort to be more attentive and inclusive. She likes to be busy and is constantly asking how she can help. Seems like a simple enough question but imagine your 5 year old constantly asking how he could help and then him feeling dejected and useless anytime you couldn't come up with something age appropriate at that very moment. And when you do find something they can do, they still need help and every time you try to help it makes them super grumpy. Fun, right? Ha! So, anyway, I committed to doing better at helping her feel useful and busy. We spent the morning at a nature center. She had such a great time. We even ended it with ice cream -her favorite. We went on lots of walks. She helped me with a project in the kitchen. She helped with laundry. Her mood seemed better. Then dinner prep came and I had her make a salad and set the table. She seemed to be getting more agitated the further into prep we got. I ended up not having anything for her to help with the last 15 minutes before dinner was ready. Consequently, the last remaining good vibes vanished. Shoulders slumped, face fell, conversation stopped and it was obvious she was upset. All the attention that day did not matter in that moment. She felt alone and useless and I couldn't help but take it personally. That's the hardest part for me -not letting it be about me. Compassion is what I probably should have felt in that moment. Hopefully there's some refining happening and some day compassion will come first and not just eventually. 

Oh my goodness, even in writing this it has become more about me and less about the awful disease leaving Carol constantly feeling alone and useless. The other day she was upset about Duncan telling her to use the gate instead of hopping the fence (I know...a post for another time) and said to him, "maybe it would be better if I just went up to my room and died". Instead of feeling sad that she was so upset maybe she actually did feel that way, I was upset she would say that to my son, her grandson. Nothing like expecting someone with Alzheimer's to act rationally to make you look like the crazy one. We have the advantage of at least understanding our emotion to some degree. I mean, eventually our rational mind steps up and helps us sort through the junk and we have some idea of what we're feeling and why. Carol is just emotion. Her rational mind doesn't really work although it's still kind of going through the motions. It's like she feels an emotion and her brain fills in the why. This makes for some pretty interesting stories that typically have similar themes -loneliness, abandonment and uselessness. Like I said, dementia is hard. It really is amazing how long she's kept her pleasant nature. We are fortunate enough to still get to enjoy plenty of her pleasantness but there's been a definite shift in her default emotions. We're looking into ways to help her feel happier and in the meantime getting a crash course in focusing on the present and stretching towards compassion rather than pride. Wish us luck. 

Gaining the Covid 19-19

I probably shouldn't make a joke about gaining weight during a pandemic that's causing so much turmoil and heartache. But, if all the funny memes coming out of this teach us anything, it's that we have to laugh about the crazy state of things or we will in fact go crazy. A little over 2 weeks ago I woke up and immediately felt like  I shouldn't send my kids to school. So weird. I had been reading about this coronavirus and had already started stocking the pantry a bit but surely the kids were fine to go to school. I brushed it off and went about my morning as if everyone was for sure going to school. But then, as I was about to drop kids off, I felt sick about it so I just kept on driving and went back home. That was a Friday and by the end of the day they had announced that kids would not be returning next week. They're currently scheduled to return on April 13th but I highly doubt they will. Just 2 weeks ago, closing schools seemed like the craziest thing. And then all big events were canceled. And then the NBA cancelled the rest of their season and then it went from no groups of 100 to 50 to 10 to 0. No groups. And it progressed to this point in less than 2 weeks. And now watching movies with people hanging out in big groups is weird. We're normal. I've always known I was good with change. A master transitioner. But the rate at which I accepted social distancing and stopped worrying about my kids being out of school is actually a bit scary.

The kids seem to be handling things well also. They don't seem anxious. I've asked them if they're afraid of getting sick. They say they aren't. It helps that we don't really have any friends here to miss hanging out with. No sports or clubs. And we moved just in time to spend Quarantine with nice weather, beaches (now closed), a big backyard and a pool. Jimmy is still working and Mom seems to remember now why we're not going to Vons. We really are fairly unaffected and I do realize how unusual that is. My heart breaks for all the people who have lost income. The working parents who have to figure out what to do with kids home from school. Huge events put on hold. Lost senior years. And the other seniors isolated and alone in retirement centers. A friend told me that her 93 great aunt hadn't left her room at a care center for 11 days. And lets not forget the doctors and nurses and medical staff working around the clock and risking infection to give the necessary care. And then, of course, there's those who are sick. It's weird how they're kind of last on the list. It's interesting to realize how little is talked about the actual sick people. And the only reason I know any of this is because I read about it and see pictures and videos online about it. I don't know anyone who is sick. I haven't heard any first hand accounts from friends who are doctors or nurses  about conditions in hospitals. I don't have a loved one in a retirement center or kids missing anything that matters that much. So, yeah. Sometimes shutting everything downs feels like an overreaction. It's so weird to feel so disconnected from the threat and still so anxious about it. And by anxious I only mean, like, thinking I have "The Virus" every night between 12am-2am. No big deal. No, but really, in my head it feels like this shouldn't be a big deal but if you threw me on an elevator tomorrow with 5 strangers I would hold my breaths, make fists and burn my clothes when I got home. But if you ask me if I'm afraid of getting it I feel like I could honestly say, "no." Tell me I'm not alone in this weird place between being very concerned and  yet feeling like all these restrictions are a little much. Could we please just get some rapid testing ready to go so In-N-Out and Chick-fil-a can take over drive-thru testing and we could all get our results with a side of fries in the next 24 hours? Awesome. Thanks.

They Call Me Caregiver Holly

Crazy times make you do crazy things. What's crazy about this time? Just a world wide pandemic forcing whole nations to go on lockdown. I could probably count on one hand the times in my life I had said the word "quarantine" before last week. Now it's part of the daily vernacular. Along with social distancing, shelter in place, stop the spread, flatten the curve, hoarding, toilet paper shortage, ventilator, self isolation, n95 mask. Oh man. Once I started I couldn't stop. And then having to explain to Mom every day that we can't go to the grocery store or go get her hair cut because of "The Virus". It's all so surreal but not panicky. It should feel more panicky. It doesn't. Now would be a good time to mention that our immediate family now includes Mom MacDougall. We moved in at the beginning of the year to take over her care as well as manage the house. That's actually the reason I'm here, sitting at my computer at 12:40am trying to put words together after not putting words together for many moons. Our experience is unique. I mean, most 30 somethings (I can claim that for 1 more year) are raising kids, not raising kids and caring for aging parents with dementia. I've been encouraged to write about it. I've hesitated because if you know me at all you know I like to find humor in things. And, well, people do funny things when they can't remember stuff and I in no way want to come across as mocking or disrespectful. Hopefully, together, we can laugh about the crazy, cry about the hard, smile about the wonderful, and wonder about the truly fascinating. This journey with Mom has it all. But most of all, it has lots of love and learning. I'm excited to share it with you

Waking up Crazy

Do you ever have those days when all of the sudden you see EVERYTHING that has to be done and the fact that it's not done and will only be done when you do it makes you feel like there's an elephant on your chest? Before this moment the gross baseboards were just there, the chaotic closet was annoying but functional, the stack of books without a home could wait...but then all at once, none of it can wait. Somehow, today, every unorganized nook and un-mopped floor became a reminder that I'm failing -that I'm not good enough.

It's just so weird to think that yesterday I was living fairly contently in this not so perfect house of mine and today I feel like the walls are closing in on me and I have to do something about it before I go crazy. So, in an attempt to combat the anxiety, I made a list of things that needed to get done.  It's amazing how merely the act of writing a list can give you back a small sense of control.  Don't get me wrong.  This is not a post about how I turned my anxiety into productivity and had an awesome day.  In fact, it's the opposite because after a few hours of laundry, vacuuming and mopping my giant pregnant body began to rebel against the plan. If it had been any other day, I probably would have given myself a pat on the back for getting a few things checked off my list and taken it easy the rest of the day. But I just couldn't relax today.  In fact, I still felt the panic and need to address all the problem areas along with the nagging discomforts of an overworked pregnant body.  You can imagine how pleasant I was to be around.  Ha! My poor children.  I was a beast. And then Jimmy came home and it just made things worse. Oh great, now I have to deal with the shame of him hearing me snap at the kids.  And he's probably annoyed that I'm not coming downstairs to greet him or ask how his day was.  Just another person whose needs keep getting in the way of me getting all this stuff done that has to get done and no one else is going to do it. Oh great, and now I have to deal with the guilt of being horrible to my kids all day and now to my husband.  Ahh!!! Yes, it was a bad day. 

Finally, I'm making myself sit here and get it all out.  I'm one of those people who often doesn't know why they're feeling or acting a certain way until they write it all down.  Clarity almost always comes and with clarity a little sense of peace -something I was in great need of tonight. And as always, I'm humbled by the forgiving nature of a child. I really was awful today, but at the end of it all, they know only how to snuggle and hug, not to hold a grudge. I Thank God for that and the hope of a better day tomorrow. 

See...I Really Do Only Blog When I'm Pregnant

I can't let this pregnancy go completely undocumented.  To our surprise, It took over a year to get pregnant after the miscarriage.  My thoughts have changed so much on that whole experience over the past year and a half.  So much so, I'll have to save that for another post.  This will be just a timid tip toe back into the blogging world. As always, pregnancy makes me a bit crazy and emotional and in the past, this blog has proven to be a nice outlet for all my random thoughts.

Speaking of being emotional...

A crazy thing happened the other night while I was sitting on the couch kind of watching T.V. and kind of internet surfing, and kind of sipping hot chocolate and completely making Jimmy crazy with this behavior.  Just a typical week night when out of the blue Jimmy said something to the effect of, "All this must seem really daunting.  You know, with your back hurting so bad and Thanksgiving coming up, then Erica's wedding and Christmas, and then the baby. And with you not feeling well, I bet it just seems overwhelming, huh?" 

*insert scratching record sound * WAIT. BACK UP NOW. WHAT DID HE JUST SAY?

Seriously, I love my husband, but he's not really the sensitive, makes astute observations about my emotional well being and initiates conversations about them type. I can't tell you how amazing it felt to hear that from him.  As soon as he said it, it's like I felt strangely validated for having all these emotions that I hadn't quite figured out myself. Did someone give him a book or something? If so, thank you. But I have a feeling I just married a good one.  

Thoughts on Miscarriage and Abortion

Well, I used to be pregnant.  I used to be 16 weeks and 2 days pregnant.  I was feeling all the energy and normal-ness that returns in the second trimester.  I was excited for our 20 week ultrasound next month, and a little scared too.  And then I had the appointment.  I immediately knew that something was wrong when the nurse couldn't find the heartbeat with the doppler.  She played it off like it was no big deal and went to get the doctor who would surely find it.  Meanwhile I lay there, as the words, "this is happening" repeated through my mind.  Sure I let myself hold onto a sliver of hope as the doctor tried and failed with the doppler and proceeded to the ultrasound, but deep down I knew it was over.  This pregnancy and all that I thought was happening was all kind of unreal now.  I had been telling people I was pregnant and yet that little heartbeat had sputtered out 3 weeks ago.  I kind of felt like a fake.  I remembered each touch of the belly, anxiously anticipating the first butterfly kicks.  It felt kind of silly now.  I don't feel that way anymore.  But, initially, there was this weird sense of embarrassment, like I had been fooled and perpetuated this trickery somehow.  I don't know if that's normal.

I wasn't grief sticken like I felt might be expected.  Don't get me wrong, I was sad, but I had a strangely practical approach.  My sister had recently miscarried twins around 12 weeks and I was fully aware that 1 in 4 pregnancies ends in miscarriage and this was my fourth.  I did feel some relief at the 12 week appointment when we finally found that little heartbeat and the doctor told me my chances of miscarriage just went down by 80%.  However, I went to my 16 week appointment thinking there might be something wrong because I hadn't felt movement.  That was the only sign of trouble.  When they told me there was no heartbeat, I had the realization that this was actually happening.  So many women go through this and now it was my turn so...now what? I never had guilt or thought I caused this somehow.  It just happens and it actually happened to me, and yes I'm upset and sad but again...now what?

According to the doctor, I had two options. I could take a pill that would induce labor and actually go to the hospital to deliver this tiny baby/ fetus/ tissue. (I hope that doesn't offend anyone.  Personally, I'm having trouble defining it).  When I asked how bad the pain would be and the Dr. said they would offer me an epidural, that option was a no-go.  I was left with getting a D&C. However, I would have to go to a specialist at a clinic because the baby/fetus/tissue was too big for my doctor to perform the D&C.  I opt for the clinic, not really considering what this "clinic" might be like.  I started researching and sure enough, it's an abortion clinic.  Ok...that may be too general of a term, but it's a clinic where they terminate pregnancies and prefer to deal in up front cash transactions.  I started freaking out.  I absolutely hated the idea of going to a place where they did abortions and having a doctor who performed them.  I had never imagined I would be put in this situation or that I would have such an emotional response to it.  I felt panicked.  I didn't know what to do, but after talking to a friend who had lost a baby at 17 weeks who had opted for labor and delivery, I knew that was not what I wanted. (Not sure why I can call my friend's a baby but have such a hard time labeling mine the same?) Feeling out of options, I kept my appointment at the clinic the next morning.  

I can't say it was a mistake but I can say it was not the right place to send someone who just had a miscarriage.  I felt so uncomfortable, a feeling that was only made worse by the paper work.  There was a "Consent to Terminate Pregnancy" document that I passed over because it obviously didn't apply to me.  But sure enough they had me come to the front desk to sign at the bottom.  When I asked why, they assured me that it didn't apply to me but I still had to sign it.  I wish I had fought back more, but I just wanted to get this over with.  I signed it and sat back down and held back the tears, as some woman repeatedly told her crying toddler to "shut up".  And of course there just had to be a woman there who, judging from her phone conversations and her meetings with the front desk staff, was trying to figure out how she was going to finance her abortion.  I'm not judging these other people at the clinic.  I feel like telling my kids to shut up all the time.  I have no idea the details of this other woman's circumstances, but the whole setting was just wrong for someone in my shoes.  I shouldn't have been there.  Fortunately,  it did get better after I got out of that waiting room.  The nurses were some of the nicest nurses I've ever had.  The doctor seemed compassionate and competent. I hated the idea that he was so "experienced" at this procedure but at the same time, it made it easier to trust his judgment to do the one day rather than the two day procedure.  I avoided general anesthesia, and instead was given some psychedelic drugs that sent me to bizzaro world just long enough for them to do the procedure.  It was way cheeper.  And again, the nurses were great.  

Of course I've been analyzing the whole "clinic" experience to death.  I've read a lot of things in the past 6 months to solidify my pro-life stance, but my visit to the clinic made me realize that it is so much more than picking a side.  I felt physically ill at the idea of being at a place like the clinic, as well as once I was actually there.  I felt it in my bones and in my gut that abortion is wrong.  At the same time, I gained a new perspective.  I didn't just look from the outside and say this place is "evil" and all who work there are bad people.  I felt the compassion of the nurses and doctor.  I know they deeply believe what they are doing is right and that they're helping people.  Probably as I deeply believe it's not.  I can't judge them for interpreting things differently.  I can't even confidently define what they removed from me -I  get how blurry things can be.  But, I also know how I felt and what I feel, and that it's not something I could ever support. 

So what now? Well, I'm finding it's not as easy as I thought to just move on.  I feel like emotionally I'm dealing with the loss well, but the physical effects of the D&C are lingering about, annoyingly.  Also, I thought the absence of pregnancy symptoms would HELP me move on, but instead my little boobs just make me sad. Ha ha.  Or the diminishing pooch that I'm used to rubbing at night, just reminds me that I don't have an excuse not to do sit-ups.  I even miss the the throbbing of those varicose veins on my leg.  So "moving on" is taking time, but that's good, right?  It wouldn't be right to just go on like all this never happened. A lot of good has come of this little event in our life.  It has brought Jimmy and I together.  It has made me more aware of the friendships and the goodness of the people in our new home.  And most importantly, it has made me even more aware of the presence of God in my life and the miracle of my three great kids.  Thanks for listening to my story -this was very therapeutic!

-Holly
*After reading through this I just wanted to make it clear that I'm not trying to downplay miscarriage.  Everyone's experience is different and any amount of grief is completely justified.  This is me just being honest about how I reacted and handled it. 

Fruit Leather Valentines

 

Last year's very last minute valentines were inspired by a Winnie the Pooh book called, "Friendship Day."  Thank you Eeyore, you grumpy old donkey you.  Considering it was the morning of and I had everything on hand, and they were HEALTHY...I was pretty proud of myself.  (I've gotten pretty good at tootin' my own horn these days...who else is going to?) Anyway, it's super simple.  Using Fruit Leathers and small polk-a-dot cup cake liners we made ribbons for our very worthy friends.  I cut out circles for the middle and chose to the phrase "Prize-Winning Valentine"(from the book), but I think #1 Friend/Valentine would be work too!  I think the larger liners would be cute -or  even layered with the small ones.  We just went with what was available, but there are so many ways to make these better. Anyway...Happy Valentine's Day to all the last minute moms like myself!