We Need Some Help

I have struggled with how to write this update because there really isn't an easy way to explain where we are right now.

When Grandma lived with me, one of the hardest parts of caring for her wasn't actually the medical care. It was feeling like somewhere along the way I had stopped being her granddaughter and had simply become her caregiver.

Grandma and I have always had an incredibly close relationship. She has always been loving, sweet and supportive of me. For most of my life, I could practically do no wrong in her eyes. Her unconditional love is what made her one of the most favorite people in my life.  But while she was living with me, her personality toward me changed.

She became easily angry, argumentative and sometimes intentionally hurtful. If I tried to establish a boundary or tell her that something she said or did wasn't okay, the conversation often turned into things like, "I guess I'm just a burden," or "Nobody loves me," or "I just won't ask anybody for anything anymore."

At the time, I honestly believed a lot of it was because she desperately wanted to be back home and she wanted to be with Desiree.  Kim would come help a couple of days a week, and Grandma absolutely adored her. They were best buddies. I sometimes had a difficult time understanding how Grandma could be so sweet and pleasant with Kim while being so angry with me.

I talked about it with Kim and Desiree, but neither of them was really seeing the same thing I was seeing. And, understandably, some of it was chalked up to her being 93 years old, frustrated, sick and no longer able to live the completely independent life she once had. But I knew she just wasn't "My Grandma."  Her love had become very conditional.

Now Grandma is back in her own home.

Kim has moved in with her and has been there a little over a month. Grandma is near Desiree again. She is in the place she wanted so badly to return to.  And unfortunately, the behavior has continued.  In fact, now Kim is experiencing much of what I experienced.  One of the biggest struggles has been nighttime.  Grandma has difficulty getting safely in and out of bed by herself, so we have asked her to call Kim when she genuinely needs assistance. Instead, for several weeks, Grandma was repeatedly waking Kim throughout the night for things she was capable of handling herself—asking what time it was, saying she couldn't sleep, wanting snacks or simply wanting someone to come into the room.

Even after Kim became completely exhausted and begged her to allow her to sleep unless she truly needed help, it continued.

These are the same things I experienced when Grandma first came to live with me. 

There have also been arguments over basic care and safety.  When Grandma gets angry with Kim, she has told her to go home, told her she isn't welcome there and said that she is "done" with her.  She has also made comments such as, "If they find me dead, it will be your fault because I can't call anybody for help because it makes everybody mad."

That's incredibly difficult for a caregiver to hear—especially someone who has rearranged her entire life so Grandma can remain in her own home.  Kim has called me crying more times than I can count.  And now even Desiree has said, "Something is wrong. I have never known my mom to be like this."

I completely agree.

This does not feel like the Grandma we have always known. Yes, Grandma is 94. Yes, she has significant medical problems. Yes, losing independence is frustrating, frightening and probably heartbreaking.  But I also don't think we should simply dismiss a dramatic personality and behavior change because of her age.

We are continuing to deal with medical problems as well. In just the last couple of weeks she has had two ER visits involving dehydration, diarrhea, involuntary body jerking, low sodium, elevated blood sugar and other concerns. Her kidney function continues to be something we have to watch very closely.  With Grandma, everything is a balancing act.

Her medications, kidney function, sodium, blood sugar, hydration and infections can all affect how she feels and behaves, so we are continuing to work with her doctors and pay attention to those things.

But there is another part of this that I need our family to understand.

Kim cannot do this 24 hours a day, seven days a week, indefinitely without help.

The original plan was for Grandma to attend the Senior Center some during the week so Kim could have a few hours to herself. Grandma has refused to go. That means Kim essentially never gets a break. And caregiving without breaks is not sustainable. So I am asking our family for help.

If you live close enough to visit Grandma, would you consider occasionally spending two or three hours with her so Kim can leave the house, run errands, have lunch with a friend, take a nap or simply have a few hours where she isn't responsible for someone else?

It doesn't have to be every week.

It doesn't have to be a huge commitment.

Even a few hours occasionally would matter.

For those who talk with Grandma regularly, I also need your help reinforcing something with love.

Please remind her that Kim is there because we all want Grandma to be able to stay in her own home. Kim is not a servant.  She is a caregiver and a human being who needs sleep, rest, kindness and time to herself.

Grandma absolutely should call Kim when she needs help. We do not ever want her afraid to ask for assistance.

But there is a difference between needing help and expecting another person to be available every minute of every day.

I don't know how much of Grandma's behavior she can control right now. That is something we are trying to understand.

So I am not asking anyone to call her and fuss at her.  I am asking you to love her, talk to her, encourage her and help us reinforce some healthy boundaries.  And maybe most importantly, I’m asking everyone to remember that Kim needs support too. She is the one carrying most of the day-to-day caregiving right now, and she cannot do that without rest, encouragement and help from the rest of us.

She gave up a tremendous amount to make it possible for Grandma to come home and I don't want Kim completely broken down in the process.  I also don't want our family to wait until we reach a crisis and then realize we should have helped sooner.

I will always do everything I reasonably can for Grandma. Desiree will too. Kim clearly has.  But the truth is, we need a village now.

If you're willing to spend a little time with Grandma, give Kim a break, make a visit, bring lunch, sit and watch television with her, talk with her or just be another familiar face in the house for a couple of hours, please reach out to me, Kim or Desiree.

You don't have to know how to provide medical care.

You don't have to take on a huge responsibility.

Sometimes we simply need someone willing to sit with Grandma and love on her for a while. That would help more than you probably realize.

We love her dearly and we are trying very hard to honor her wish to remain in her home for as long as we safely can.

But we cannot do that without help.