Monthly Archives: August 2016

Guilt in Caregivers

There are many caregivers in our world, more than at any time before.  Caring for a loved one who is ill places very difficult demands on family members.  However, it is not just in the act of caregiving that we face challenges, but in the feelings that go along with it.  One of the strongest feelings is the caregiver’s guilt.

No matter what you do, you believe in your heart that it is not nearly enough. You have a job, a family, a health issue of your own, a home far away—the everyday obligations and obstacles. In your rational self, you know you are doing what you can, but your heart is stronger.  It nags at you during the day and keeps you awake at night.

Add in dementia.

You keep visualizing your loved one sitting all day long in a lobby except for the three trips to the dining room and any trips to the bathroom. She doesn’t read or watch tv. In spite of your efforts to encourage her, she is not interested in any of the offered daily activities. She doesn’t remember any recent visits, so she is feeling lonely, neglected, forgotten. You know it. How soon can you get there, and how many days can you stay? And once you leave, for how long will she remember you were there?

The answer is to be there every hour of every day, but you can’t be. So it’s guilt—ongoing tear-at-your-gut guilt. It is demoralizing, agonizing, and unrelenting.

And wanting it to end? Worse guilt. And when it does finally end? Probably the worst guilt yet for feeling relieved that she’s not living that way any more and for feeling relieved that you no longer have to feel guilty for not being there.

So there’s really no good ending to this story for any of us.

Notice the caregivers in your world.  Really see all your coworkers and friends who are bearing this burden on top of doing their jobs, raising their families, trying to take care of their own health issues, and travelling miles or even across country to do “the right thing.”  Their stress is enormous.  Maybe mention caregiver’s guilt and ask them how they are holding up.  Maybe they’re not.

For another post dealing with preparations for death, click here to read “Happy Birthday to You: Birth and Death.”  

Swiss Chalet, a Sweet Delusion

If you’re going to have a delusion, make it a sweet one.

My mom told my sister recently that she bought a chalet and that when she got fed up with being in her assisted living facility, she now had a place she could go to escape for a while. I can imagine my sister’s dismay, intellectual curiosity, and restrained amusement at this new delusion of my mother’s. Mom went on to say that she bought a second chalet, as well, so that when we all came to visit, we would have a place to stay.

That is so sweet of her!

This is so bizarre, though. I mean why would Mom buy a chalet? A nice English cottage I could understand, but a chalet? It makes no sense at all.

Okay. Maybe you think I should be more concerned that Mom is buying imaginary properties with imaginary money, but that’s really not the perplexing part of the delusion for me.
You know how you have dreams at night that make absolutely no sense at all? You wonder where on earth they came from? And then other dreams actually do seem connected to your day, something you’ve been worried about, or something you saw on tv or read about?

Well, another delusion of Mom’s is that she consistently thinks we are in Vallejo, California when we are not. That delusion makes sense to me.  She liked visiting General Vallejo’s house. But a chalet? Where did that come from? It’s not like Mom’s very poor London family sent her off to a posh Swiss finishing school in the middle of World War II.  And I don’t see many chalets around California where she lives now. So where did it come from?

The brain is a mystery whether it is crazy dreams, illusive memories, odd thoughts, false perceptions, or the hidden corridors of dementia. I don’t know why, but somehow there is a Swiss chalet in my mother’s brain.

For a related post, click here to read “Upside of Dementia, I: New Relationships.”

A Prisoner of Dementia and Self-Awareness

One of the hardest things to deal with in a loved one with dementia is their own self-awareness of their deterioration.  And, Oh, Man!  When they cry, that’s the worst.  The tears are usually followed by, “I hate it here,” “I’m a prisoner here,” or “What’s the matter with me?  I feel so useless.”

Of course, I haven’t experienced the combative stage yet.  Some friends tell me it’s sure to come and it is BAD, but my mom isn’t there yet. So, for now, this is the worst for me.

Can you imagine being aware of increasing dementia?  You know that your mind is going and that you don’t remember parts of your life any more or even ten minutes ago.  You can’t manage your own affairs or even operate a phone. Other people help you dress and accompany you everywhere.  You are not allowed out on your own as if you are a prisoner.  You think no one loves you because they haven’t visited you “in a long time,” but they tell you it was really just two days ago.   You can no longer read a book because you can’t follow the story line.  Every time you pick it up, it’s like you are starting from the beginning again.  So, what do you do?  You just sit in the lobby all day long.  It’s a fearsome existence.

There is no point in ignoring the tears.  When my mom says she hates it at her assisted living facility, I go with, “I know, Mom.  It was so much better when you could live on your own in your own apartment.”

I don’t mention how it was even better than that for the eight years she lived with my awesome generous sister and brother-in-law.  She had her own wing in a beautiful home, a fabulous garden with a koi pond by a vineyard to relax in, and neighbors coming and going.  However, she chose to move out.  If she hadn’t, she never would have suffered the injury that catapulted her into dementia.  But, I can’t throw that in her face or even “bring it to her attention.”  Besides, she doesn’t even remember those years, so why distress and confuse her?  I just say, “I know, Mom. I know it’s hard.”

She’s right.  She is a prisoner.  But that is because she is a prisoner of her body which keeps falling down and a prisoner of her mind which is also rapidly failing her.  She no longer has any independence, and that is a sad thing.  But her self-awareness that things are not right, that she can’t remember what you just said to her, that she is losing control–THAT is scary.

So please, keep your core muscles strong.  Falling leads to more than broken hips.

Note: For a helpful article, Responding When a Person with Dementia Wants To Go Home by Andrew Rosenzweig,M.D., go to the Communication Strategies tab on the following website: verywell.com

Creative Conversations

Are you a stickler for facts? Oh, dear. You are not going to have a good time. This is the time for flexible reality and for creative conversations.

Your mother thinks every time you take her out that she is in some other town? And, it’s always the same town? And you have told her a dozen times, “No we’re still in (her hometown)”? Give it up. Instead, try thinking, “Isn’t that great. She loves that town and I just saved a lot of time and gas getting her there.”  Ask her why she likes it so much. If you ever went there with her, reminisce. Bring up other places you have visited together or apart. You might find out some very interesting stories about places that are in her long-term memory.

Your father insists that an empty lot in town or the lawn outside the restaurant is where the car races are held?  Wonderful! It doesn’t matter that no car race has been held in town ever. For some reason he thinks they have been. Who are we to set him straight? Express interest. Ask what kind of cars. Transition to stories about cars and car trips in your family.

Your sister says that she doesn’t have a place to sleep, and she tries out the various empty beds in her assisted living facility. She tells you that each one has a different view. Don’t bother pointing out that she has her own apartment there and always sleeps in the same bed. Appreciate the variety and the adventures that the facility “offers.” How nice. Which bed does she like? How are the neighbors?

Your friend asks you the same question five times in a fourteen minute conversation. Don’t get distressed or annoyed. Figure out how to answer it differently each time. It’s an interesting challenge. I always think, “What if she realizes if I answer the same way that she already asked and forgot?” I don’t want to embarrass or distress her. Improvise, elaborate, give a completely different answer. You’d be surprised how many ways you can answer the same question.

Think of all conversations as a creative writing assignment or an improv exercise. It’s good for you. Keeps your mind alert. Keeps you young. And it makes for interesting conversations. You never know what you may learn if you let the conversation flow instead of correcting every dubious statement.

Note: For great suggestions regarding communication strategies, including confabulation, see “Confabulation in Dementia: What Is It and How Should You Respond?” by Esther Heerema, MSW in the Communication Strategies section at verywell.com.

For related posts from this blog, click here to read “Confabulation Can Be Wonderful.”  Click here to read “Dealing with Delusions.”

Dementia Calling

cropped-the-scream-1.jpgWhether it comes on slowly or faster than a speeding mullet, dementia is not for the faint of heart or the inflexible of personality.  When dementia reaches out and touches someone in your family hold on, hold tight, keep your chin up, laugh when you can, cry when you need to, and vent.  Vent a lot.  That’s probably the biggie.  Do not suffer in silence.  Coping with dementia is a group effort.  And, preferably done over a glass of wine. Or four.

Upside of Dementia, I: New Relationships

“You mean there is an upside to dementia?” Oh, yeah.  Everything and everyone is new.  Relationships and all the baggage associated with them are wiped clean.  Ever wanted to start all over?  Here’s your chance.

Small pleasures become great. 

There is a popular joke in retirement communities.  There are many ways to set it up, but here’s a basic one:

“What’s so great about growing old?”

“I don’t know.”

“You can hide your own Easter eggs!”

Yuk yuk.   But seriously now . . .

Dementia resets family relationships.

If you’ve had a less than satisfactory relationship (read “constantly frustrating”) with your loved one, here’s your chance.  Relationships that have been set for decades are now totally negotiable.

Dear old Dad always thought everything you ever said or did was simply adorable?  Well, don’t be surprised if he suddenly starts admonishing you for mildly snarky comments that he used to totally understand and agree with.  Now’s the time to step up your game and regain your awesomeness. Become more charitable, or at least bite your tongue.

And, what if Mom, who never liked you very much, is now strangely delighted to see you?  It’s not a setup for yet another time when she hurts your feelings.  Run with it!  You’ve reached the unreachable with absolutely no effort on your part whatsoever.  You’ve hit the jackpot and maybe a place back in her will.  It’s a clean slate.  Make the best of it!  It’s a new world.

Secrets are forgotten.

You don’t have to be embarrassed anymore.  Mom now can’t remember that horrible indiscretion during your junior year in high school and will finally quit bringing it up.  Thank you, dementia.

Conversely, she doesn’t remember what you know about her, so you no longer have to work so hard to avoid certain subjects. What a very freeing effect on your conversations!

You become beautiful.

Remember how Mom used to make hurtful negative comments about your (hair, body, clothes) every single time there was a family get-together?

Well, somehow magically, things have changed. She now keeps telling you and everyone around how great your (Insert one of the above.) look/s.  Proving yet again that beauty is in the eye of the beholder.

 

We will keep adding to this list.  You’ll be surprised.  Dementia is not all doom and gloom.

(Click here for Part II: Conversations, and click here for Part III: Preserving Family History.)