Feeling Left Out

A common concern that occurs on a regular basis is that of feeling left out of the fun parts of life by family and friends.

As caregivers, it is important to find time for fun; however, more of us can say without blinking that we just can't find the time. And the more we have to forego and decline invitations from those around us, the fewer events, evenings out, and vacations we find ourselves invited to. Thus, the cycle continues, and we feel more and more burnt out and left out, especially if we are unable to find someone to help lessen the weight on our shoulders, even for an hour a week or month. We get left out of things we should be included in.

And it hurts.

I get it. I am in the same storm with you. My family is.

As dementia progresses, the more time it takes us to assist our loved one and be "on call" at any hour. The same predicament exists for other progressive diseases as well, such as cancer, ALS, MS, etc. You get it. We cannot afford to leave them. Time marches on unrelenting, as we know.

Knowing that this is my second round of being a primary caregiver for someone with dementia within this decade, we were already mentally prepared for the declines, the unrelenting time demands, and no real vacation away or time off to genuinely relax. I feel the tension in my jaw and shoulders after three years of this.

A couple months ago, our oldest child asked for a whole family weekend away at a water park for their birthday, instead of a party. We were hopeful, with outside assistance from a caregiving company, that we could accomplish this request. It had been about two years since we had a family weekend away and has been over three years since we have been able to spend over a week away as a family. The request was not unreasonable for two nights at a waterpark.

Well, as soon as we checked in, we received a call concerning our loved one. Not only was their behavior irate and unusual, but they were going outside yelling for help. They had been triggered when told they could not go where they wanted to go because the place of business was closed for the day. Rather than understanding, they became angry and irrational. The dementia took over, along with confusion, which led to their feelings of being scared and loss of control.

All of us who have cared for someone with dementia have experienced this in one form or another.

Of course, it happened when we were trying to relax and have fun as a family unit. It was not a relaxing weekend for me, since I was calling every hour or two for updates.

With that, it is apparent that we are not going anywhere far for any overnight stays as a whole family, even with the assistance we have, in the foreseeable future.

So while we get to be an audience for others' vacations and wish them well (at least not feeling jealous or resentful for not being included because we know this is a temporary phase in our lives), our loved one really needs us and does not understand the gravity of their own situation. In their competent state, we know how they would have behaved and thought. And watching the progression of their disease is saddening and can be frustrating, especially since we do not have the ability to stop what we know lays ahead.

The only thing I do wish is that the people who are doing the vacationing in our lives would treat us better and not treat us as though we do not exist.

But this is also a way to "weed out" the people in your own lives. We find that it is common for family and friends to disappear on us when we desperately need people to come over to us, instead.

But they don't.

You know that. I know that. They do not show up for us, even if some tell others that they are.

This is something I have heard nonstop from everyone who has been or is a caregiver.

I wish them well - silently- as I let them go. What other choice is there?

They have no intention of being in my life, so I am not one to force someone to be in my life.

And it is not as though I am being given a choice - they literally are treating us as though we do not exist, so why try to put in the work and effort of both sides of a relationship that they clearly do not value or care about.

I do not have time or energy to waste. Nor do you. Caregiving is not for the weak or lazy.

And it is exhausting to deal with how fake people are. They are draining to be around. So don't.

And honestly, if they cannot show genuine empathy for you as this journey progresses, then reducing your expectations of them to zero is the best for your own mental health.

I have had "family" intentionally make my life harder when they saw me struggling and grieving with each decline with my dad. And let's be real: grieving is ugly, especially when you have to say goodbye to different abilities and aspects of your loved one while they are still technically alive. I think that is worse and harder than when they are already gone. You still have to essentially care for the shell of who they once were and try to still love them for who they are, all while also grieving what is gone and what you have to helplessly watch leave them, piece by ugly piece.

IF you are in "the squeeze," you are doing this while also raising your own young children.

I had to do this with newborn babies and toddlers when I was caring for my dad.

Not one of these so-called "supportive and wonderful" [family members] came over to help or support me or even to spend time with our children in our home to give me a break.

I lost all respect for those individuals. Their decisions were exclusively about their own lives.

I also cherish my real friends and actively concerned family members more.

Dream of your future vacations, how you want to relax, and how you want to spend your time - and with whom. I keep telling my children to think of where we should go and think of how to prepare now.

So while we get to be an audience to other's joys, vacations, and overall lives, do not forget that you can temporarily turn off notifications, unfollow them, unfriend them, and stay off social media. If need be, block them.

They do not need to know what you are doing, especially those who feel better about themselves by bringing others down or kick you while you are already feeling down.

Do whatever you need to stay sane and grounded. YOU are important and doing important work, even if no one is paying attention or ridiculing you for how you grieve. Remember, we are not doing any of this for validation.

Social media only shows a tiny piece of reality. And people are often too comfortable using social media to lie.

It is better to stay silent and continue your work than to flaunt someone else's lie or try to over-extend yourself.

But be brave enough to call out someone who has let you down but says they aren't. That's also tricky.

For my family, we are bringing the world into our home through a variety of ways.

We are focusing on the cultures we want to explore through food and games, and attempting to learn the languages of the countries we want to visit in the future. We are dreaming, having dance parties, singing, and trying our best to enjoy our moments together.

I wish you a wonderful summer with pockets of sunshine, warm refreshing summer rain, and rest.

And dream of your future vacations and relaxing moments.

I know that is what I am currently doing with my children.

Sometimes, that is all we have to keep us going.

And we must keep going.