Helicopter Caregiver

AnderK · April 8

Hi. Heard about Helicopter Parents? I have been a Helicopter Caregiver, and I am working to stop being one. It doesn't mean I don't care. It means that there are things I can't change, and if I try, it is bad for both of us.

No amount of cajoling will get him to do the exercises that will help him. No amount of cajoling will get him to use a walker. He will fall again. Guaranteed. I hope he is not injured. But arguing, suggesting, cajoling doesn't change the outcome, only the mood.

I am strong, but he is bigger than I am by 60# and half a foot or more. I can't catch him if he falls. If I try, I may get hurt. So I stay away from him. If he falls, I will help him up and hope no harm done.

I ask him to go to bed about 9. I turn off the lights in the kitchen, shut the shades, make certain the chairlift is in the right place. Get the CPAP ready, lay out clean sweats And depends. And crawl into bed. Check on him every half hour, and cat nap in between. I no longer stand there and wait for him. Long about midnight or one, he gets to bed. I listen to know he is safe. I tuck him in, and hold his hand. I sleep by his side.

Time is our enemy. I start suggesting he get ready to go somewhere 3 hours before we have to leave. I make certain clothes are set out for him. Sometimes we make it. Sometimes we don't. Again, i check on him every 20 to 30 minutes.

My family and friends know that I hope we can attend functions. They know we will probably be late. They know we might cancel last minute. They know not to take umbrage.

The list goes on.

Am I happy that it has come to this. No. Am I good at it? No.

But part of what I have learned is that my home is not a democracy any more. I do not have a partner, and it is when I think I do have one, well, that is when things go awry. I see glimpses of the man I have known and loved for 23 years on occasion, but i can't let that fool me. I will make certain he is cared for. That he is as safe as I can make him. I am almost always here. But my mind, my stomach and my heart can't be a Helicopter Caregiver anymore.

My 20 or 30 minutes is up. Time to check on him. It is 12.30 in the morning.

Thanks for reading. .

Kathy

Pat6177 · April 8

I hear you! At one point, I had a list of the things DH would not do. My attitude has been that it’s not worth fighting about since most things won’t make a significant change in the course of his disease. One thing I still struggle with is the attitude of medical professionals. They recommend lots of wonderful things and I feel they are judging me because I can’t get DH to do most of these things. And then they always say to make sure I am taking care of myself. I will say that letting go of getting DH to do all these things and not having the confrontations is one of the ways I take care of myself.

CindyBum · April 8

Thank you for this, Kathy. This is where I get hung up…my own expectations for semblance of normal behavior or partnership.

And now I’m entering a more argumentative and a paranoid stage with my DW. She’s fighting spending time with just about anyone but me. She’ll still accept her sisters and a couple of dear friends, but hoping she’ll have lunch with a close cousin has been very hard.

ghphotog · April 8

I think you have a good balance figured out. You are absolutely right about not pestering him to do things he can't or won't do. I think this will help many find a balanced perspective to his caregiving. Thank you for sharing this!

M1 · April 8

I think you hit the nail on the head, is that you eventually just have to give up on any expectations of "normal" behavior. Starts with chores and tasks and things you shared—but then it progresses to even the very basic activities of daily living. Bathing, dressing, toileting, brushing teeth or hair, even getting to the table for meals. Helicopter caregiver is a good phrase.

Belle · April 8

Totally understand this concept. I also finally accepted that things are different now and oh, boy did that take some time on my part to get there. Showers, changing clothing, eating meals at 'normal' times, helping at all around the house, etc. DH showers eventually, will sometimes change clothing between showers, eats if I put food in front of him (only after refusing to eat for 1/2 the day), and he sleeps whenever he wants to now and I don't fight it. I am less stressed out, which by any measure, means still pretty stressed but I'm not adding to it by trying to fix things.

HollyBerry · April 8

I get it! I wish I didn't. We are down to two things she is willing to do outside the house - go see the horses, and volunteer at ReStore (God bless them, I have no idea why she hasn't been "retired" from that activity…). I ask questions with the expectation that the answer will be no - "do you want to go grocery shopping with me?" " do you want to come for a walk with the dog?" M1 is right - I need to figure out how to let go of expectations of normal behavior without letting on that I"m doing it, because she has no idea how far away from normal she's become.

Katielu · April 8

I decided this weekend that having dementia means you get to live in a nice home and you don’t have to do one single thing to help maintain it! So I get it. We used to do landscaping together. I asked this weekend if he’d like to help me weed the flower beds “ no thank you”

He said he’d finish the dishes while I walked the dog but sat down and forgot ( which is fine as I have to find them all as he doesn’t clean them)

I have to change my expectations, but it is so hard isn’t it? I think I have it, I’ve changed… then I am disappointed and sad. I don’t tell or nag, I let it go but I am So Sad. And I’m so Lonely for the man I love, he is gone.

Thanks for understanding

Iris L. · April 8

https://alzconnected.org/discussion/comment/204966#Comment_204966

I have a suggestion. Avoid asking "do you want to…?" The confused mind says no. Rephrase to something like, "it's time for our walk" or "after our walk we'll get ice cream." Avoid asking questions as much as possible because they don't know the answer.

Iris

Pinkscarf · April 8

Hello, I've been dealing with this for almost five years now. I make reasonable progress, then I stall. It's all about expectations, right? What we expect from them. What they expect from us (which is a confused mess). What our family expects. What our friends expect. What work expects. It is tough to juggle.

tucson anne · April 9

I think there is real tension between our desire to let them be engaged in something and the reality that they really can't do much of anything. I've tried to let my husband help with a few house chores and a bit of yard work, but mostly it doesn't go well. Big accomplishment (and that's not sarcastic) is hanging out his own laundry and then taking it off the line when it's dry. And he can unload the silverware basket. I give him these chores not because he will help me get things done but because he asks, about 20 times a day, "what can I do to help." Bite my tongue; sometimes make an snarky comment, but mostly now accept that if I have him do something,let him do it his way and don't worry about results. So what if weeding (which he didn't want to do but said he would) turned out to be breaking branches off a bush. No harm; I told him it needed pruning when my surprise at the activity slipped out. Since I've figured out that most of our conflicts arise out of him "helping", I just take a deep breath most times and let him do it his way.

ThisLife · April 9

Pinkscarf, it is about expectations and it's hard to juggle. I feel it is also about whose expectations have priority, too. As a direct caregiver, yours and your LO's are at the top. LO's is a moving target. Family and friends? Not so much. They are not living it. I know what work expects is important both in the immediate circumstances and for your future security. If you know what you need from your work situation, ask for it. If you don't know the answer to the dilemma have a dialog with the most appropriate person to help you sort it out.

I had retired a little earlier than I wanted to be there for my DH. I quickly found that he didn't want to do anything. I wasn't able to do things I wanted to do. So, I decided to work part time. It has saved my sanity. I wish you the best.

Mnewell · April 10

As caregivers, we are here 24/7, trying to do the best for our LO, but what works at one time doesn't work the next time. This has all happened so fast that I am still in the learning to accept "who he is now, not who he used to be" mode. I still see an occasional glimpse of his old self, and it tricks me, but more and more, I realize it is fleeting and that he is going to be a different person every 15 minutes from who he was a year ago.

Helicopter Caregiver

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