Care Blogging

Sometimes, I let the chihuahua sit with the lady I’m caring for, though it’s a struggle.  One, because she tries to feed the dog, so I have to strategically remove it whenever she eats.  I also have to find good ways to remove the dog when I leave so that my lady doesn’t give her chocolate or let her potty in the house or whatever.  Sometimes it takes a lot of convincing for me to take the dog, but I’ve been able to each day.

Yesterday, I received a call from the lady’s visiting friend asking if she could let the little dog out to sit with them.  I told her where the key was and thought nothing more of it until I received a text later that night from the family member staying with the lady over night.  She asked if I hadn’t put the dog away.  I told her I had but that the friend had wanted to bring her out.  Well, apparently, the friend had never put the dog away when she left, and my lady fed her entire dinner to this 2 pound dog.

The past several days have seen me fall into a routine.  Awake at 6, leave the house at 6:15, pick up my lady’s newspaper, drive ~40 minutes to where she is staying at her daughters, try to sneak in a nap after giving her medicine, attempt to get her to eat, spend an hour convincing her to come back inside from the 100+ degree heat, more medicine, more nebulizer treatments, and so it goes until I leave between 3-5 in the afternoon, go home and crash into bed for a nap before magrheb.  It’s exhausting.  It really is.

Some of the highlights of the past week have included my lady calling an ambulance and me having to talk to the emergency department to not send help because she was totally fine; spending two hours trying to get her to come indoors because I had to leave; repeatedly having the conversation about how she thinks her family is playing a trick on her and keeps staying longer to take advantage of her; and juggling the expansive number of nurses, home health aides, and therapists who have been stopping by almost daily.

As it turns out, I was also worried that she had a UTI due to increased confusion earlier in the week.  Shout out and thanks to @mhmd637 for reminding me to watch for delirium, as she was showing the beginning signs.  I had the visiting nurse test a urine sample, though she has been doing much better since then.  If she did have an infection, it seems to have passed.

Anyway, I’m tired.  So tired.  I feel a lot of empathy toward her family since this is what they go through daily, and I cannot imagine how difficult that must be.  There’s a reason why burn out is so common among caregivers, and it’s because it’s simply an extremely demanding job that puts you through constant twists and turns.  Especially when the person you are caring for has dementia, you never know what to expect from hour to hour, and that makes it just about impossible to truly plan out your day and how you will care for someone.

I’m tired.  She’s tired.  I’m hungry.  She isn’t.

Her confusion is higher today, and she’s been very upset about her family not being here.  Some of it is understandable, and some of it is exacerbated by the heightened confusion so that the same complaints come out on repeat.  She’s scared, and it’s obvious.

She slept all morning again, and getting her to eat is a major chore.  She’s barely read her paper because she’s so tired, and I’m worried about dehydration, because it’s so difficult to get her to drink.  I just... idk, I feel bad.  I feel like there’s so little I can do.

There have been a few positive things, though.  One, is that I’ve let the tiniest dog here stay with her all day on the couch, which has brought some joy.  The dog likes to cuddle and sleep with her, so I’m considering it to be a bit of pet therapy.  Two, is that I’ve been able to hold some conversations with her about things she enjoys--like travel or her past racing cars and going on adventures.  And then three, she loves having her hair done, so I’ve been sure to do that every day.

Today I woke up tired.

I punched the alarm so many times that I wound up leaving the house an half hour later than I would have liked to grab my lady’s paper and head over on the ~45 minute drive.  When I got there, I couldn’t get the front door unlocked, and I could hear her calling her daughter and asking where I was.  She let me in but had removed her oxygen and was calling for help, so I had to give her an immediate nebulizer treatment and help her to calm down.

Thankfully, I knew what I was doing in that court with having had residents go through similar low-oxygen-induced anxiety and COPD, but I still managed to entirely fuck up this morning.  Yes, some things couldn’t be avoided--traffic, that she took off her oxygen, that the door wouldn’t open.  But it still started off pretty awful.

My lady had finally lied down to rest when the home health aide came by.  We went over her medications and treatments, which was extremely helpful, and she spent an hour and an half with us to make sure that we were all situation.  I am so incredibly grateful for her patience and communication to help me change the timing of medications and know how to provide the best care possible.  I apologised a few times to her, “Obviously, I’m not a formal caregiver, but I’m trying my best to help out.”  To which she laughed and responded that I was apparently far better than most caregivers that she encountered.  While I’m not entirely surprised about that, I still wish that I was better prepared for answering questions.  I know that I am placing myself in this situation as though I was a family member, which is placing an unfair burden of responsibility upon my shoulders.  But being in the field of gerontology means that I am going to hold myself to an extremely high standard when it comes to being a caregiver.  I may not have the most experience with the physical aspects of caring, but by damn, I have the education and should be better than the average person at this.

Something the aide discussed with me was changing the timing of certain medications to the evening, which made a lot of sense since many of them cause drowsiness.  If I had actually put any thought into her medications, I would have come to that conclusion.  But for whatever reason, I just blindly went along with the instructions I was given concerning the medications, which seems like a pretty amateur move.  At the same time, I’m placed in a difficult situation where I have to decide who I’m going to follow.  Am I going to go by the letter given by the family?  Am I going to follow my education?  Thankfully, I now have an answer to that since I will follow what the aide said (which exactly matches what I should have been doing, provided by my knowledge of medications and their effects on the aging body).

At this point, I am halfway through my day, and she’s been sleeping all morning.  I’m hoping that I can get her to eat something soon, but that in itself is an uphill battle.

In the meantime, I have the internet, my writing, and my Qur’an to keep my company until 3pm when I can go visit the mosque for a little while and reflect about today.  I spent a few hours there yesterday, fulfilling some prayers, studying different translations of a sura, and feeling rather lonely since Ramadan is actually a time when I see my family less.  Fasting whilst caregiving has been equal parts easy and miserable.  Easy because I am spending my waking, cognitively-draining hours in the morning when I still have energy from suhoor.  Miserable because I am missing out on a lot of sleep because of suhoor and leaving the house so early, which means that I am ready to drop by the time I leave in the afternoons.  It took me a while at the mosque yesterday to realise that my loneliness was mostly a product of being exhausted.  Yes, I am lonely.  I miss my family who don’t allow me to fast near them.  But after taking a nap and eating iftar to get rid of a splitting headache, I realised that most of my sadness had been self-imposed, and I was relieved to spend some time with my roommate before trying to grab a few more hours of sleep.

I’m briefly working as a care-giver once again, but this time for a friend’s mother over ten days.  It feels like a blast back to three years ago when I was a care partner in hell.  Except this time around, I’m caring for only one person, in her home, and with a network of people to help me.  So, really, it’s a remarkably better situation.

Thus far, everything is straight-forward.  From 7am until 3pm, I administer her medications, make coffee and buttered bread in the mornings, give her a newspaper, help with transferring, and then try to get her to eat lunch, all interspersed with nebulizer treatments.  I’m thankful that she is an avid reader kept busy with her newspaper, because it gives me time to write (both my masters thesis and fanfiction that has taken over my life, whoops!).

You may be wondering what the title of this post means.  What is experimental psychology?  What is cognitive neuroscience?  Why does it matter to a care giver?  Well, I’m here to answer none of those questions.  Instead, I’m here to tell you what this title means to me and my life, because every time that I say ‘cognitive neuroscience’ to myself, I get giddy.

So, most of you have not been made aware of the next course of my life, so I’ll just say it.  I got accepted into Saint Louis University’s Experimental Psychology PhD programme, and I will be focusing on cognitive neuroscience under the guidance of a professor doing memory and aging research.

It’s real.  It’s all real.  And SLU is going to own me for the next four to five years of my life, inshaAllah.  I’m so excited to start this journey and combine neuroscience with my gerontology degree (which will be mine in only a little over a month).  I hadn’t known for sure what steps to take, but being a doctor had always been appealing, and now I get to work toward that goal in real, tangible ways.  And I am so excited for this.  So incredibly excited and thankful for the opportunity to study something that fascinates me so much.

When working with someone with dementia, you may notice that they have a lot of trouble holding a conversation with you while walking.  This can be frustrating for a caregiver who is trying to do multiple things at the same time, but think of how frustrating it can be for someone with cognitive impairment who is trying not to fall and still keep up with your conversation. 

Walking becomes more difficult with age due to mobility problems, polypharmacy, and cognitive decline.  All of these age-related phenomena increase the risk of falls, so older adults have to spend a lot more of their mental capabilities to their balance and not falling over.  If you’ve worked in the field of aging, you know how terrible falls can be for older adults who are prone to breaking hips and severe injuries while trying to catch themselves.

For someone with dementia who already has problems multi-tasking and maintaining their mobility, talking while walking can be nearly impossible.  Many of my residents are not able to carry a conversation with you--whether that’s listening or speaking--if they are walking.  I would start talking, and they would stop walking in the hallways so that they could listen.  Eventually, I began to understand that walking was too large of a task to be split with talking, so I would generally walk beside them and only say what was necessary.  This helps them to concentrate on keeping their balance and getting to where they need to be.

Some of us in the gerontology field have talked about how wonderful it would be if college students could live with older adults instead of dorms.  Think of the possibilities!  An older adult who may need help around the house suddenly gets a live-in house-keeper, cook, and friend, and the college student gets a cheap place to stay as they study.  Meanwhile, both parties get the benefits of intergenerational living, home-cooked meals, advice and support, and friendship.  Not to mention that it would be a cheaper alternative to hiring a home-health aide or living in a dorm.

I wish so much that this was a standard practice in the US.  Like, sign up for college and check an option to live with an elder in the community.  You’d get matched up with an elder (most likely a widow or widower), move into a spare bedroom, and you’d help them around the house and with transportation while they provided you with a place to live.  Young people would get so many benefits and opportunities to learn from older adults who have a plethora of life experiences.  And older people often like the vibrancy of young people and enjoy teaching them and encouraging them.