I would guess my title is confusing. I haven’t written much about caregivers but I suspect there is so much they are not saying.

I’m not a stranger to working with someone whose memory is failing them. Being an only child I was the one to see that my mom got the care she needed. She was not very accepting of this care and didn’t like me very much until her last years.

My mother-in-law also had memory loss issues. My sister-in-law was the one that alerted us to the fact and so we tried to help with our mother and mother-in-laws care.

My sister-in-law, after taking care of her mother, also needed care and her husband and family stepped up and loved her as she was. Sadly we did not step up as much as we could have. We were one of those people who weren’t sure what to do so we stayed away, much to our regret now that we are wiser. I also think we were tired from my mom and my mother-in-law’s situation and deaths, and our way of coping was to stay away rather then to watch another family member struggle. We were not okay though we appeared to be.

My brother-in-law went from being a very capable person to one that could not navigate life on his own. My sister-in-law, his caretaker, tried to take care of him but she got tired and as a result, had a hard time making decisions about their life.

We tried to help in all of these situations. We were aware but we didn’t want to overstep, although occasionally we did, because we saw how tired their caregivers got and so we helped make some decisions.

The difference between that and my caregiving duties now is that for us or me, it wasn’t 24/7. I could leave the situation but in each instance, those family members that were caregivers never complained and would always say they were okay. It’s like a shame to admit we can’t always handle things on our own when we are caregivers. We become tired. Our decision-making is occasionally made out of tiredness because we can’t think about one more thing. Reaching out to others seems like a weakness and there is the fact that family and friends do not always know what to do or they feel uncomfortable.

There is also the guilt if we have to put a loved one in a facility where someone else cares for them. The reality I have seen is that tired caregivers aren’t always the best people to care for the people they love. A wife goes from being a wife to being caught up in the chores of making meals, juggling doctor appointments, seeing the house is safe and keeping their place of living clean. They become a mother not a wife. The world for both of them becomes lonely.

We are blessed as when we reached out we have been receiving wonderful support. My children help when they can and my daughter saw that I was too tired to find a place to live where things would be easier for us. She took charge and that was what I needed for us to make a move. It was hard to trust that job to another person, even my daughter.

Though my kids are supportive they haven’t been able to be here much because of distance and busy schedules. Appearances short term can be deceiving, hiding from our family the reality of what is actually happening on an hour to hour or daily basis. Family might think they know what we are going through but unless they spend days with us, they don’t, just like I didn’t get the full picture with all the people in our family that have had this issue before us. I didn’t live it all day and all night on my own like they did. It is mind-blowing and a wearing, bone-tiring job. There I said it. It is tiring.

I know my kids think I complain too much. I vent to them and I probably shouldn’t, and they give the only response they know how to give and most of the time that is: “It’s going to be alright.” And it is,and I don’t know what I expect them to say at that moment.

I think the gist of what I am saying in this long diatribe is this: I try to be positive and most days it works. I suspect that is true for most caregivers because we know what our loved one is going through is much worse. But there are days when we just want to shout to the rooftops “I am not okay.” But we don’t because of the response we get from others. We need our loved ones to understand we need for them to let us to not be okay for a moment, an hour, a day, so we can pull ourselves back up and go on with all the details our life now entails that we don’t want to do. Let us have those times and don’t feel uncomfortable when we feel that way. It will pass. We just may need to express it out loud. We’re not looking for sympathy we need to let it out and not bottle up unhealthy feelings.

I had a recent phone conversation with a person that has taken care of their loved one for a long time. Their children want them to move to somewhere where there is more help. The kids have given them brochures, telephone numbers etc. to no avail. The children have given up and said there is nothing more they can do and have resigned themselves that this is not going to end well.

In talking to their person recently, that is the caregiver, I said, “You’re just too tired to make any of these decisions, aren’t you? The thought of finding a place to move and then actually moving plus trying to tell your loved one is overwhelming.” They broke down and said, “Yes.” So the children and the parents are at an impasse because the children don’t understand this and the parent can’t communicate it. I imagine there are many scenarios like that.

If you’re reading this, take away from it what you want. I’ve found help through an Interfaith Caregiver’s group in my county and the VA , because my loved one is a Veteran. There are also county services you might qualify for and if you’re a Senior Citizen, the Senior Link Line is a great resource too. I know you’re tired, but reaching out to one of these might bring you some respite.

Don’t forget bout family and friends. They can’t help if they don’t know. Our kids, our extended family and friends, plus these groups have kept us going. God brings blessings when our tears fall. It’s okay to not be okay, and don’t let anyone tell you any different.

Minnesota Senior Link Line

Interfaith Caregiver’s

Alzheimer’s

Some of these are Minnesota Link’s but most states have their own resources.