The Lost Hummingbird

Life as a caregiver of a Grandpa with Dementia/Alzheimer's

[idreamtofgravity]

you could ask me and i would tell you question what yellow is i’ll bring you down the sun tell me that your mother is waiting i’ll tell her we’re out playing cards don’t end your thoughts with a dot only if there’s half an oval up above camp fire wood eyes covered by a gray cloud drive me to the root beer stand pack my lunch for the car let me turn the hands on the clock to the left maybe that will help there are capsules in a box i’ll pour my love onto it perhaps it would bring you back and if that doesn’t work i’ll still have enough love left over to laugh along i’ll still have enough love left over to stop the crying

[thelosthummingbird-blog]

So Beautiful.

[thelosthummingbird-blog]

ummmm .... what?!

“Gather up all these teeth, put them on the same ring. Not sure if they will fit in one locker or not”. -Grandpa. 

[thelosthummingbird-blog]

Of course . . .

Left Grandpa alone napping in his bedroom while I cleaned the kitchen and washed dishes .... and of COURSE he rips out his IV line. Some days are better than others. Today is one of those days its harder to find the humor.

[dementia-by-day]

Why “remember?” doesn’t work

Very often I’ll watch caregivers interact with their loved ones who have dementia. And, very often, I’ll hear them repeat this phrase: “Remember, I told you that…?”

It’s a real pet peeve of mine. Your loved one with dementia doesn’t remember.

What happens when you ask them…

“Do you remember what you had for breakfast?”

“Don’t you remember, I just told you I was leaving at 4:00?”

“Don’t you remember, you fell last week, that’s why I can’t let you walk around.”

I guarantee that they’ll start to get upset. You can imagine that you’d probably get upset, too, if someone was constantly reminding you that you didn’t remember something. 

It’s already probably pretty annoying when your spouse says to you, “Don’t you remember, I told you we had plans that day?” Or your child says to you, “Remember, you were supposed to call me earlier today?” It’s irritating, because it makes you feel dumb for forgetting or getting mixed up.

The same thing happens when we do this to people with dementia.

Trying to get someone with dementia to look back into their memory bank and recall what you just talked about, what they had for breakfast, or when next week’s plans hold is not useful. Oftentimes, the information isn’t there to begin with. Sometimes, the information is there, but dementia has impaired their ability to retrieve it.

The only time that you should use the word “remember” in dementia care is when you’re talking about the distant past (like over 20 years ago). Then, your loved one probably will be able to recall what you’re talking about.

[theprocast]

I’m only here for the laughter and love.

Once those disappear, I will too.//E.M.//8 words #88 (via theprocast)

[thelosthummingbird-blog]

ugh

You fall asleep for TWO seconds and he pee’s in his drinking cup. The bathroom is quite literally 10 steps away from his bed. 

[thequotejournals]

It’s okay to lose people but never lose yourself.

Anonymous   (via thequotejournals)

#truth

[enjoy-the-life-baby]

[thelosthummingbird-blog]

Sometimes this is all we, caregivers, need for the day. #dementia    #alzheimer’s   #lifeofacaregiver     #thestruggleisreal 

[bled]

[thelosthummingbird-blog]

#staytrue

[thelosthummingbird-blog]

Before The Lost Hummingbird

My grandfather was always there for my single mom, my sister and me. He was a wonderful father figure. Always a hard worker, helping others and learning new ways to improve his home. He built my grandmother a house by his bare hands. Grandpa was a “manly man”.

I guess that’s why it is so hard to see him this way. In March of 2016, he was diagnosed with Alzheimer’s and Dementia. Our world was shattered. How could this happen to our Rock? 

That day we got a phone call from the police department that Grandpa was placed on a 51-50 hold. He had hallucinations that someone was trying to kill him, so he grabbed his baseball bat, ran to his truck and took off. He saw some police at a nearby parking lot and knew he needed to speak with them. After explaining his story, the police thought he may have been a hazard to himself and others.

This was a blessing in disguise. During his 72-hour mandatory psychiatric stay at the hospital, the doctors were able to run every test imaginable. His health was perfect. Heart was great, lungs were strong, blood samples all perfect. No cancer, no flu, no infections. After an MRI of the Brain, they determined this strange behavior was caused by the degeneration of Brain Tissue. 

Of course we had our suspicions. He would repeat stories over and over …. and over again. We just told ourselves it was because he loved these stories and loved sharing them. Yeah, it was weird when the remote was found in the freezer. (But…this is normal right?! … I’m sure even I might do this if I’m not paying attention, right?!) 

Mom and I were definitely in denial about Grandpa’s state. Nobody else in the family visited him on a regular basis to even tell a difference in his attitude. But does that make them worse than Mom and me when we were stuck in our denial?  

This is why I said his hospital stay was a “Blessing in disguise”. This got us to wake up and really take action. 

At that time, I was living in Escondido. Grandpa was in Vista. My mom was in Murrieta. We all knew Grandpa could no longer live on his own. We tried shifts staying with him at his house. This was exhausting for us. Although my younger sister did try and help, it was still exhausting. I made the decision to purchase a home in Murrieta so my Grandpa could live with me, AND be close to where my mom lives.

It has been just shy of a year since our move. This has been a crazy, whirlwind of a roller coaster. That is putting it nicely. I went from being single, living alone with a cat, to being a caregiver - which compares to having a newborn/toddler/teenage attitude all in one. :) Constantly cooking, cleaning, laundry, no such thing as a quick trip to the store. I have to pack up extra clothes, a wheelchair…the list goes on. 

I was writing in a journal about my day to day life caring for Grandpa. However, if this blog helps someone else through their day to day life as a caregiver, then I feel I can sleep better at night. (err at least when Grandpa sleeps, that is.) 

Thank you for reading! If you can relate, I hope this helps you cope. xoxo

[thelosthummingbird-blog]

#alzheimer’s      #dementia      #caregiver

[realitiesarenegotiable]

[thelosthummingbird-blog]

Sometimes, you just have to have a sense of humor to get through it. Otherwise, you will end up bitter and unhappy. #ilovemygrandpa       #findthecure         #lifeofacaregiver

[ipodsforalzheimers-blog]

People do not realize that Alzheimer’s is not old age. It is a progressive and fatal disease and staggering amounts of people develop Alzheimer’s every day.

Melina Kanakaredes  (via ipodsforalzheimers-blog)

#truth

[alzheimersonlinetips-blog-blog]

Alzheimer's Disease - Two Dreaded Words

Alzheimer’s Disease – two words capable of producing terror to the very depths of a person’s soul.  The fear of acquiring this disease tends to increase with age.  For some who have a family history, fear strikes every time you can’t find the car keys or forget an appointment.  For them, age is not as big a factor as family history.  You question yourself frequently as you worry that you might be showing some of the early signs of the disease.  A diagnosis of Alzheimer’s is devastating to the victim who is coherent enough to understand what is happening and to everyone who loves him.

[thelosthummingbird-blog]

Pretty sure @alzheimersonlinetips-blog-blog read my mind... along with all the other Alzheimer’s caregivers. Worded perfectly. #ilovemygrandpa #ihatealzheimer’s  

[dementia-by-day]

“Don’t ask for permission, beg for forgiveness.”

So many family caregivers will say to me, “But mom/dad/aunt/brother/spouse will not let me…”

Take the car

Move them into a care community

Pay the bills for them

Take over the healthcare Power of Attorney

Send caregivers to the house

Do the grocery shopping

Make any decisions for them

Bring them to the doctor

What I always tell these caregivers is, “Too bad.” 

When your loved ones have dementia and can no longer may healthy decisions for themselves, it is no longer up to them what happens.

This may sound harsh, but think of it this way: would you want your loved one with dementia driving down the highway alone? No, probably not.

If that’s the case, why are you letting the car stay in the driveway? Why are you keeping the stove plugged in? Why are they at home by themselves most of the day? The answer is this: someone needs to take over their decision-making. And that person is you.

This is a “don’t ask for permission, beg for forgiveness” situation.

If you’re waiting for permission to do something regarding your loved one’s care, you’re going to be waiting forever.

Your loved one is never going to say, “You know what, I woke up this morning and decided to let you take over the bills, plan my day, and move me into a care community.” It’s just never going to happen.

The hard truth is this: you need to be their decision-maker. When he or she can no longer make safe choices, you need to make those safe choices on their behalf. (And this doesn’t involve asking first!)

So shrug off that guilt, take a deep breath, and blame it on me. I know that you don’t want to be the “bad guy,” but, sometimes, the bad guy IS the good guy.

[thelosthummingbird-blog]

#hardtruth 

[littlewickedthings]

Chellberg Farm by Lynne Dohner on Flickr.

[thelosthummingbird-blog]

#agirlcandream 

[traitspourtraits]

[thelosthummingbird-blog]

#life

[thelosthummingbird-blog]

Before The Lost Hummingbird

My grandfather was always there for my single mom, my sister and me. He was a wonderful father figure. Always a hard worker, helping others and learning new ways to improve his home. He built my grandmother a house by his bare hands. Grandpa was a “manly man”.

I guess that’s why it is so hard to see him this way. In March of 2016, he was diagnosed with Alzheimer’s and Dementia. Our world was shattered. How could this happen to our Rock? 

That day we got a phone call from the police department that Grandpa was placed on a 51-50 hold. He had hallucinations that someone was trying to kill him, so he grabbed his baseball bat, ran to his truck and took off. He saw some police at a nearby parking lot and knew he needed to speak with them. After explaining his story, the police thought he may have been a hazard to himself and others.

This was a blessing in disguise. During his 72-hour mandatory psychiatric stay at the hospital, the doctors were able to run every test imaginable. His health was perfect. Heart was great, lungs were strong, blood samples all perfect. No cancer, no flu, no infections. After an MRI of the Brain, they determined this strange behavior was caused by the degeneration of Brain Tissue. 

Of course we had our suspicions. He would repeat stories over and over .... and over again. We just told ourselves it was because he loved these stories and loved sharing them. Yeah, it was weird when the remote was found in the freezer. (But...this is normal right?! ... I’m sure even I might do this if I’m not paying attention, right?!) 

Mom and I were definitely in denial about Grandpa’s state. Nobody else in the family visited him on a regular basis to even tell a difference in his attitude. But does that make them worse than Mom and me when we were stuck in our denial?  

This is why I said his hospital stay was a “Blessing in disguise”. This got us to wake up and really take action. 

At that time, I was living in Escondido. Grandpa was in Vista. My mom was in Murrieta. We all knew Grandpa could no longer live on his own. We tried shifts staying with him at his house. This was exhausting for us. Although my younger sister did try and help, it was still exhausting. I made the decision to purchase a home in Murrieta so my Grandpa could live with me, AND be close to where my mom lives.

It has been just shy of a year since our move. This has been a crazy, whirlwind of a roller coaster. That is putting it nicely. I went from being single, living alone with a cat, to being a caregiver - which compares to having a newborn/toddler/teenage attitude all in one. :) Constantly cooking, cleaning, laundry, no such thing as a quick trip to the store. I have to pack up extra clothes, a wheelchair...the list goes on. 

I was writing in a journal about my day to day life caring for Grandpa. However, if this blog helps someone else through their day to day life as a caregiver, then I feel I can sleep better at night. (err at least when Grandpa sleeps, that is.) 

Thank you for reading! If you can relate, I hope this helps you cope. xoxo