Thinking For Two – How Caregivers Cope

Two brains cycling

Caring for someone with memory loss requires thinking for two.

Thinking For Two

We’ve all heard the wives tale that a pregnant woman is eating for two.  Most people are probably unaware that people caring for someone with memory loss requires thinking for two.

After a visit with Mom, even a good one, I’m exhausted. Mentally, physically, I’m drained and it’s getting worse as she declines.

With most of my visits I try to take her out.  Giving her enjoyable moments is important even if she’s not going to remember them. She’ll remember that being with me is nice and that’s all I can ask these days.  It was on one on an outing  I realized I was thinking for her as well as myself.  

Mom is in the late stage of Alzheimer’s and she gets confused easily by shadows.  We see shadows as shadows but she sees them as something treacherous and tries to avoid them.  Because of this, walking anywhere takes triple the amount of planned time.

Thinking for her seems to help some. Noticing a spot that gives her hesitation I’ll explain “it’s just a shadows on the carpet”.  Pointing out something that she’ll find pretty, like a bird helps prevent her from watching her feet. I fear she’ll fall since she’s bent in half but telling her to stop has been pointless.  The overcast day we walked in the regional park made it clear that shadows are a safety concern for Mom. (Less shadows = less feet watching)

Thinking for Two Starts Intuitively

I believe that caregivers start thinking for their loved ones intuitively.  It’s likely one of the many reasons caregivers feel they’re also losing their minds.  Thinking for two is not how are brains are wired.  Parents of very young children do this but there is a huge difference.  

Babies cannot walk away, turn on the stove or any other manner of dangerous things. Toddlers do get into dicey situations, but adults still retain the feelings of being independent even when they are not.

Giving instructions to our parent or spouse generally doesn’t end well.  Just like verbally pushing a toddler to move faster, verbally pushing someone with Alzheimer’s is futile. It’s also generally counter-productive. The more we use words to attempt to get what we want, the more frustrated WE end up becoming.  

Unlike with the average toddler, a person living with Alzheimer’s gets worse over time. They can’t learn a particular path is an easy walk. Each walk on that path is new and each shadow a new obstacle to figure out.

Especially challenging for adult children caring for a parent is their lack of desire to please you. It’s not natural for them to want to please you. Constantly giving them instructions generally doesn’t yield the desired result.

Thinking for both of you then becomes a necessary default. As the caregiver we have to see the world through their eyes and anticipate what they may think or feel.  If they sense a situation is unsafe and we’re hurrying them along, it’s bound to get unnecessarily stressful.

Mental Exhaustion from Thinking for Two

It’s challenging, but being aware that you’re “thinking for two” allows you to take steps to lessen the mental exhaustion.  I mentally think through our outing before I take Mom out. Going to the same places makes this easier. Being aware of what challenges we might encounter gives us a chance to plan how we’ll handle them. There will always be surprises but by being prepared those surprises shouldn’t cause too many struggles.

Similar to dealing with a small child, keep in mind that some places are overly stimulating.  Spending as short a time as possible in them is ideal. I know that Mom has the potential for overwhelm when she tells me how big a place is to her. Or she complains about how loud a place is.

Go places during the “off” time. The supermarket just after work can be overwhelming for the average person. It’s better to handle that task earlier if possible. Better yet, take advantage of ordering online and picking up yourself. That’s actually something I should do to save me some time each week!

My “Solutions”

For me, my outings with Mom generally don’t have to be errands. I handle those before a visit so she & I can do something nice. We take drives to the hills, watch kids in the park. All enjoyable and easy outings that generally don’t require too much “thinking for two”.

If you’re caring for a spouse or a parent full time, there are things you can do to keep them calm.  Keep in mind that repetition can be a sign of insecurity.  They may be looking for something comfortable or familiar.  It’s hard to know when this is the case so watch for clues. Mom needs to have her purse with her so I make sure she has it.  I’d rather she clutch her purse than “worry” her fingers the entire drive.  Even when she forgets it in the car, I make sure to hand it to her. Otherwise, she may ask a dozen times if she has her purse.

One of my biggest challenges with Mom is her apathy when we go out. She can be quite engaging with other visitors, but with me, I get very little from her.  I’ve learned that being overwhelmed can cause apathy so I’m trying to ease into our outings. It takes longer to get going but if our visit is better I guess it’s worth the time.

More Useful Stuff

Another thing to keep in mind is this; as soon as you find a work-around to a particular issue, things will change. Understanding that you will always be wearing a detective hat might help you to feel more in control.  Talking to other caregivers, listening to supportive podcasts and reading books will also help.

Everyone’s journey with Alzheimer’s or dementia is different but sharing our journey may help the next person some. If you’re like me and have challenging situations that others haven’t, share them. One less mystery to solve will give that caregiver extra brain power to solve the next mystery.  Every caregiver needs as much brain power as they can muster.

For more helpful discussions, check out one of the 50+ podcast episodes. I talk to very informative guests who share what they learned on their journey as a caregiver!  You can find Fading Memories on Apple Podcasts, Google Play or Spotify as well as other podcast players.

Where Else To Find Fading Memories

Be sure to share this podcast with other caregivers! Thanks. You can find us on social media at the following links.  Facebook    Instagram    Twitter

Also, check out our new YouTube channel where you can see us in action!

Deciphering Dementia Speak

Deciphering dementia speak

Deciphering dementia speak requires serious detective skills.

One of the biggest struggles of communicating with a person living with Alzheimer’s or dementia is repetitive questions or comments. I’ve been struggling with this with my Mom more lately and I think I understand why she asks a particular question over and over.  Now I have to figure out how to deal with the underlying cause.

It took awhile to realize that the question wasn’t an actual question. This is one of the challenges of Alzheimer’s or dementia.  Her question came up organically although it wasn’t natural to Moms’ core personality. I assumed that was part of the changes caused by her Alzheimer’s.

Mom has always been an independent person, almost to a fault.  Her recent habit of repeatedly asking if “her husband” knew where she was (was going) was kind of odd. Honestly, she was the type of person who may or may not have left a note when her schedule deviated from the norm. She also rarely cared if no note bothered you.

It’s this background that made this particular question, her insistence on making sure he knew where she was was, troubling. I would answer every time and try to help her move on. Lately, the question comes even if we don’t leave her care facility. Sometimes the questioning escalates into her accusing him of dumping her on me, a statement that I find troubling.

Does she really think her oldest daughter, wouldn’t visit unless Dad insisted?  That’s a painful thought to consider especially because it’s untrue.

Becoming A Dementia Speak Detective

Lacking understanding of why she’s more insistent with this question has been causing me a lot of mental anguish.  I like to know the “why” of something, how to fix something, how to help.  Most of those things are impossible to accomplish with someone with Alzheimer’s.

Deciphering her question isn’t just for me, it’s also for my listeners. I started a caregivers support podcast to help people like me. Not being able to help myself makes me doubt my effectiveness in helping others. This is why I seek out people who have “been there, done that”.  I think that’s what finally led me to a breakthrough.

Possible Reason for Moms Question

Dad has been gone 2 years and 10 days (3-2-2017). Mom doesn’t remember he died which sometimes seems to be a blessing and other times a curse.  I’m a lot like my Dad but never considered that to be a factor in any of my interactions with Mom. That may still not play a role but it got me to thinking.

Mom hasn’t seen Dad since the day he died. I’m not sure how she processed his being in a hospital bed because you couldn’t talk to her about that. She simply didn’t understand (or seem to understand) what was going on with him. She didn’t understand he was on Hospice, his wish.

Reflecting on my own loss is how I got to my A Ha! moment.  I don’t think Mom is concerned that he know where SHE is, I think she misses him. She’s concerned she doesn’t know where he is and THAT is the reason for the insistent questioning I get from her.

What to Do With this Info?

Frequent, repeated questions or comments are how a person living with Alzheimer’s or dementia tries to communicate with us. It’s up to us to be detectives and determine what is at the base of the question. That isn’t easy. Thinking about what could be the underlying “reality” behind a questions will help. Moving past our frustration and finding ways to help them articulate their needs will help them communicate better. It will certainly help us.

On my next visit with Mom when the question comes up I’ll ask her if she misses him. This might be dangerous. I don’t want to upset her by opening her up to grief.  I have a couple of days to plan out how my end of that conversation can go.  

Dad travelled to Africa twice so I can pretend he’s there and not gone. I’m not sure yet what the right path my be, I may have to make decisions in the moment. That makes me nervous. Keeping the question light should help Mom answer without reliving the loss of her husband. That’s what I hope will happen.

As I tell most of the guests on my podcast, I’ve been on this journey with my Mom for a very long time. My best recollection is it’s been close to 20 years. That’s pretty much my entire adult life.  One would think that I’d be an expert by now but no., I’ve learned more in the last year talking to others who have been on this journey than I thought possible.

Moving Forward

My advice to those on this journey, be as patient with yourself as you are with your loved one.  Caregiving is not the same as raising a child, the journey gets tougher every year.  The need for our detective skills increases at the same time our ability to read uninterrupted, go to a support group or take a long walk in our own thoughts, decreases.

Surround yourself with as many people on this journey as possible. Ask as many questions as you can. Read as much as you can. Listen to podcasts, whatever it takes to become as educated about this disease as possible.  The more you understand, the easier the journey can be. Considering this journey is one of the toughest that anyone can take, that’s a big deal.

What Do You Remember Episode