Negative Nellies and Finding Your Village When Caring For a Loved One With Dementia

Today's ingredient is one that is getting rather stale in my salad; Negative Nellies.

No matter what you do or how you do it, doesn't someone always have something negative to say?

Don't they always scream the loudest? Puff a lot of hot air with nary a solution.

Don't they always have a much better way to do whatever it is that you are doing and they just can't wait to tell you about it.

"Oh wait, you want me to actually do the thing? No no no, I would rather just tell you the "right" way to do it, 'cuz you are doing it all wrong, ya know" 

As caregivers this can happen on the daily.

A lot of you are the only ones caring for your loved one and yet everyone around you wants to tell you how you are doing it all wrong.

"If I was taking care of him, I would do this not that."

"Well, if it was me, I would change this."

"If I was taking care of her, I wouldn't let her do this."

"If I was taking her to her doctor's appointments, I would have been sure to tell them that."

Isn't it funny how everyone with all the advice is never in the trenches beside you.

They're off living their best life, while you are barely making it through the day.

You go to bed tired and you wake up tired; that is if you even got to sleep at all.

When you need a break, suddenly those voices you hear so much from go silent. 

No one is running their mouth about what you are doing wrong in the moment because they are all standing in the corner as still and as silent as can be hoping you won't see them.

Not one of them comes to your rescue. Not one of them offers their time, only their judgment.

The ones who judge you the most are the ones who disappear the quickest when your distress signal goes up.

Therefore......

It's at this point you really have to work hard not to take it to heart.

Caring for a loved one with dementia will be one of the hardest and possibly the loneliest jobs you will ever ever have.

Watching a loved one change before your very eyes from the person you knew into someone who looks the same but acts completely differently is beyond anything you can prepare for.

You can study and research and talk about what you think it's gonna' be like but the reality of it will be completely unique to your situation and your loved one.

There are some very real similarities with dementia patients however because every single dementia patient is different, how the disease manifests within them will also be different.

There is no doubt that this will be one of the biggest challenges of your life.

That being said, there will also be some amazingly wonderful moments along this journey as well.

You have chosen to do a beautiful thing for someone else and usually somewhere along the line you will realize they did some beautiful things for you too.

Moments of joy with your loved one may become less frequent as you go along but I guarantee they will be there. Hold on to them.

You may be one of the lucky ones who does have others to help you. Maybe they come over a few times a week or a few times a month and you get a break.

If you do, praise God. Make the most of it each and every time. Go out to dinner, see a concert or just lock yourself in your room and take a well deserved nap. Do whatever you need to do to recharge your battery.

What you are doing is hard and you can't do it running on empty.

Unfortunately there are many more of you who are doing this all on your own.

Sink or swim, no one to save you.

Maybe you knew coming into this that you would be on your own or maybe you thought it would be a joint effort and since have been left in the dust.

No matter how you thought this was going to go, with dementia it very rarely goes as planned.

You need others in your life.

You need to have a village beside you and behind you. People you can talk to, cry to and laugh with. People that rejuvenate you.

If you don't have this coming from family and friends, please reach out to somebody.

The Alzheimer’s Association is always a good place to start.

They are there for this very purpose.

The folks at the Alzheimer’s Association can guide you through your next steps. They can help you find caregivers in your area and connect you with local hospice and support groups. They can offer expert advice or simply just listen to your story. They can be there for you when nobody else will and they can be there for you LIKE nobody else will; because they are living it. 

Unless you have been there you don't truly understand it. This holds true for most anything.

People can offer empathy or even their sympathy but they just won't truly get it until they have lived it.

The folks at the Alzheimer’s Association get it!

Connect with dementia groups online. Facebook has a bunch. Again, all of the folks in these groups are either going through or have gone through what you are going through. Although they are not experts, they can offer their opinions and their support.

Get a therapist. If you are unable to leave the house you can find one of these on line as well.

It's really important to have someone who is there just for you. Someone who can help shoulder the load, if not physically at least emotionally.

Caring for the Caregiver is just as important as caring for the dementia patient.

Caregivers tend to forget that part.

We are very good at taking care of others but we really suck at taking care of ourselves.

Dementia is something that you never wanted to learn about. It is something that you never wanted in your life, much less in your home.

Now that it is here, gather your army. This will be one of the biggest battles of your life. You will need them every one.