Stories from others on The Job

There are a lot of dementia stories from a lot of people.

My life is nothing new. People have been doing The Job for hundreds of years, and untold generations have cared for their aging and infirm relatives. The focus on those of us doing The Job has become more concentrated lately, and more resources are available to us than ever before. I have spent countless hours researching respite care, assistance through Medicare or the military, hospice care, and paid caregiving. I’ve constantly been amazed with what it COSTS!

Cost, I would venture a guess, is one of the primary reasons so many of us resort to home care for the elderly. It isn’t just that we appreciate the honor and privilege of doing The Job for our loved ones, it’s at least partially because there isn’t another option!

I’ve done The Job with the help of hospice care, a full-time caregiver, and both of my parents have intermittently used home health. So I’ve used many different resources, and no matter what I used…I was in charge…it’s incredibly isolating…unless…you have friends….

Dementia Stories From Friends

I’m very fortunate that my circle includes a number of people who have held The Job, and it is incredibly helpful. It is not only useful to hear their experiences, but it is a completely judgment-free zone. We as caregivers tend to be very hard on ourselves. Often, we are misunderstood by people who have never done The Job. Having people in your circle you can talk to about the challenges and struggles makes it easier for us to make the right decisions at the right time.

I encourage you (in the strongest possible way) to build yourself a caregiver support network—it will save your sanity on numerous occasions. From sharing the sad to the disgusting to the hysterical, I find tremendous comfort from talking to these friends about what I am going through. They can relate, and sharing these dementia stories over a glass (or a bottle) is a monthly requirement in my life.

I’ve asked a few of my friends to chime in about their own dementia stories of having a parent live with them. In all of these cases, it happened to be the mother of my friend. Does that make it easier or harder to care for one’s own mother as opposed to a mother-in-law? I have no idea, but it’s interesting that my entire circle are daughters!

When your parent is completely bedridden

Caregivers are, above all, problem-solvers. We are faced with a myriad of problems every day that demand immediate attention. We adapt. We overcome. We survive. We make lemonade out of the oranges that grow on our peach tree.

So what if your mother is completely bedridden with advanced Multiple Sclerosis (MS), and you have three—count them three—kids under the age of 8?

Here’s what my good friend Kelli did:

She started her own business. That’s problem-solving, grit, and ingenuity at it’s finest.

To support her dual roles of caring for her family and providing care for her mother, Kelli started an in-home daycare center. This gave her the opportunity to stay at home with her own growing children, care for her mom on a full-time basis, and financially support her family as well. It served multiple purposes, and was highly successful for years! Years after her children were in school fulltime and her mom had passed, Kelli continued to provide daycare to families.

In retrospect, Kelli is quite satisfied and content with what she did and has no regrets. She should be—I witnessed firsthand how incredible she was as a support for her mom. She did this all while raising three strong kids and keeping her highly successful marriage as a priority.

Kelli’s Dementia Stories

Because of the physical diagnosis of MS, Kelli and her beautiful mother had several advantages not always available to dementia-only sufferers.

Kelli had home health on a regular basis, including having some doctors come to the home as well as nurses, phlebotomists, etc. If you can find a way to do this—and have Medicare cover it—you will be in a much better position than most caregivers. Kelli did not have to concern herself with arranging transport for her mom, thank goodness. 

The one thing Kelli mentioned specifically—and I know we keep going back to it—is respite care. She “absolutely has no regrets but without respite care, you will definitely reach burnout!” Learn from the struggles Kelli endured and overcame—use your support system to its absolute fullest.

If all else fails…pay for it. 

How did Claire and Marie handle dementia and blindness?

My dear friend Claire shared duties with her sister, Marie, as their mother’s health failed. You want the double whammy that was their life? Their sweet mother was completely blind, and fell victim to severe dementia very quickly.

A Little Background

Claire’s mom had a degenerative eye disease, so her sight slowly failed through decades, during which time she and her fantastic husband prepared her for independent living. After his unfortunate death in 1998, she lived independently for a number of years, during which time Claire and her sister would make extended visits to her home to check in. Once she was unable to live alone anymore, she lived with one daughter or the other—alternating between their homes 3 miles apart. 

Here Is What Claire and Marie Did:

How do you distract a blind person who can’t read or watch TV? And how do you convince them nobody is peering through the windows? How do you battle the hallucinations that plague someone you can’t convince with visual evidence? 

At least they had each other.

That is what saved them. This is an excellent example of the use of respite care, because they were available to cover each other, so they could get some rest. While one sister dealt with the night terrors that plagued their mom, the other sister could be sleeping and fresh for the following morning.

One of the horrible symptoms Claire’s mom displayed was not sleeping. AT ALL!!!

She would catnap throughout the day, but awaken quite suddenly with another hallucination or thought that scared her. As Claire sadly recounts, “It is just heart breaking to watch a once vital, self-sufficient person decline”. She agrees, though, that being able to share that load with her sister made the unimaginable tolerable. 

How did Trish handle general decline due to old age?

I’ve got a great friend named Trish, who raised her kids alongside mine. We lived just two streets apart, and our oldest kids were together in elementary school—her daughter even had my Sweet Husband for her kindergarten teacher!

Trish is one of the strongest women I know—a proud self-made Turkish lady who cared deeply and passionately for her mother, while maintaining a strong and healthy family life with her husband and two kids. Trish had a much more difficult job than I do, because her kids were so young. That was really her biggest struggle—managing a young family while providing adequate care for her mother.

Trish’s Dementia Story:

Trish’s story is heartbreaking, because of her constant need to balance the needs of young children with the need of a parent behaving like a young child. When you have two kids under five and a parent over 80, NOBODY is very good at following directions. Even worse, they are all completely dependent on the caregiver.

It’s a classic case of a strong woman who is constantly battling the feeling of “enough.” Am I doing enough for the kids? Am I doing enough for Mom? Am I doing enough to support my marriage? Unfortunately, many of you are in this same hideous cycle right now.

The Difference Between Trish And Me

I was fortunate that my kids were older and more independent before things became difficult with Pop. I was able to reason and rationalize with my kids—they understood what was going on, and that sometimes I had to put out the fire that was blazing the highest. Trish was often left with the difficult situation of putting one “child” before the other.

For example, getting kids to school. It was easy for me—I just left the house with the kids and my parents continued to have breakfast and read the newspaper. For Trish, every day was fraught with concern. She would rush from the house to drop the kids at school, only to rush back home to make sure her mom hadn’t wandered off. 

If this is your reality, I feel for you. I really do. Please consider respite care immediately, and very, very often.  

How Cheryl handled multiple dementia symptoms?

I’m much luckier than most Dementia caregivers, because Mom doesn’t often display aggression or wandering behavior. What do you do if your parent exhibits multiple symptoms? That’s what happened to my close friend, Cheryl.

Cheryl’s Dementia Stories:

Cheryl took her mom into her home when the disease was, unfortunately, advanced.

Cheryl (another teacher) had raised her sons, and was living with her husband. She wanted a stop-gap for her mom before putting her into a facility. Unlike several of our dementia stories, Cheryl felt certain that a facility would be coming into play eventually. That said, she wanted to keep her mom home, comfortable and loved, for as long as possible.

A quote that Cheryl kept close to her heart was by Tia Walker: “Caregiving often calls us to lean into love we didn’t know possible”.

It wasn’t too long before Chery’s mom slipped quickly and roughly into severe Dementia, and that’s when the fun came to Cheryl’s version of Crazy Town. Her mom exhibited multiple common symptoms of Dementia, that made it impossible for her to remain in their family home for very long. In addition to the wandering and aggressive symptoms, Cheryl’s mom started to have problems with boundaries and personal space. All of this combined to make her stay with Cheryl shorter than expected—but every day was valued and appreciated by both mother and daughter.

The cautionary tale of Cheryl’s experience? 

Recognize when things become untenable in your situation. Do everything you can for as long as you can, the elderly deserve the safest and most secure environment possible.

Sometimes that environment is outside of your own home. 

Did you see yourself?

I’m wondering if you see yourself in any of the strong, passionate, vibrant women in this week’s blog? Which of these stories resonates with you and your particular situation?

Did you see the common theme?

Despite each person doing The Job differently, they were all: Successful!!!

Just. Like. You.

THANK YOU FOR READING THIS FAR

Hey, since you’re here! You may as well check out some other tips, like eldercare home preparations, here, or eldercare finances, here! Or, check out our other topics here! Either way, I appreciate you!

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