Like most people, Ted and I have been exposed to the music from the newest Disney animated film, Frozen. The music is pretty catchy and we have been playing it quite a bit. Ted bought the newly released dvd the other day and we thought we’d wait to watch it until this past Sunday when Amanda spends the day at our house.

We’d been playing the music and talking about the movie to Amanda for a couple of weeks and she never acted interested. We got eye rolls from her when we talked about viewing the movie. Our excitement about finally seeing it was met with her negative and disinterested response.

We watched the movie yesterday and, as I expected, she LOVED it.

Now allow me to veer this story to another direction before I tie it all together 🙂

We’ve had some issues with Amanda lately with the primary concern being that she has been taking off her A-VAP at night. Long story short is that an A-VAP is kind of like a C-PAP that all you snorers and sleep apnea people out there wear at night. If Amanda does not wear her A-VAP she can get very ill with breathing problems and pneumonia. Lately, she has been taking it off shortly after going to bed and the eventual results will be hazardous to her health.   The issue has resulted in Ted and me searching for a better place for her to live. She needs a place where there is 24-hour staffing so that the staff can check on her during the night and help her put her A-VAP back on.

We have been talking to Amanda about moving her to a group home or even another apartment where she would have one or two roommates. We feel Amanda would benefit from the safety of 24-hour staffing as well as the stimulation of having more people around her. (If you know Amanda at all then you KNOW she is a people person.)

This morning at 6am she called Ted on the house phone and made me get on the extension. She wanted to inform us that if we so much as tried to move her to another place that she would stop making her evening phone calls to me – communication would be cut off!

She threatened us.

Welcome to the thankless yet necessary world of the caregiver.

Whether it is a parent looking after a special needs adult child or an adult who is tending to their aging parents, we have to make decisions that our loved one is not going to like. It’s so hard. I asked my friend, Elaine Pereira author of the book, I Will Never Forget, about her experience with her mother and whether she ever got threats. Elaine’s journey with her mother down the road of dementia and Alzheimer’s is the topic of her book. Here’s what she said: “My mother finished that sentence [of making threats] and several like it often after her move from Kalamazoo to the assisted living place near me. To some threats (“I’m going to call and tell them to come get me”) I would reply with “You can do that Mom”. To the more sinister one to the receptionist: “If you don’t call my daughter, I’m going to slit me throat!” we immediately scheduled a psychiatric consult which was very helpful. Pretty much anything in between hopefully can be diffused, redirected, moderated, etc.” ***

So my dear Amanda, I know you love your apartment, but because we love and care for you so very much, we have to do what’s best for you and find a better place for you to live. We know change is hard for you, but you will stay healthier in a place with 24-hour staffing and will certainly enjoy the extra living companions.  But we were right about the movie – we knew you’d love it. And I think you will find that we are right about moving you.

Oh she was angry on the phone with us this morning. Later in the morning, she texted me: “DO YOU WANT TO BUILD A SNOWMAN? : )” My interpretation: I (Amanda) am no longer mad at you and I want to tease and joke a little and of course you were right that I loved the movie yesterday. (For those of you with no clue about the movie Frozen, view this: http://www.youtube.com/watch?v=g58-qQUyY4A ) She told me later that she couldn’t get the song out of her head.

Amanda’s threat of cutting off communications in the evening with me did not scare me into changing our plans for a new home for her. In Elaine’s words, the threat has been diffused for now.

It’s still not easy – being a caregiver – and having to make (and force) some decisions.

This small storm has passed.

I guess I shall just …

Let it go.

(Oh – you Frozen watchers knew that was coming! And for those of you who need more frozen info:
http://www.youtube.com/watch?v=moSFlvxnbgk )

Just Laurel

***Find Elaine Pereira’s book, I Will Never Forget at Amazon.com.