Caregiving and Emotions

Mom often told me the tv was broken when in fact she forgot how to use the remote or forgot how to turn the tv on. Sometimes it was unplugged.

This week I found myself in an Alzheimer's Chat, two of them actually.

My mom is gone now, but sometimes I find myself in these places, wanting to help or comfort others, let them know they're not alone. Maybe I wandered there looking for those things for myself.

The conversation turned to memory care facilities, nursing homes: quality of care and best practices.
The memories of looking for a facility and moving mom in came back with such clarity and detail.
That task was easily the most counter-intuitive thing I've ever done. It was also the most gut wrenching. I'm not alone in this experience, I know that from the chats. While the details differ, the overall experience may be common.

Mom went with us to shop for just the right place. That was a good news/bad news experience. "Mom we'd like you to join us to look for a care facility-for you." Then mom begins her objections: she's not sick, why the hell are we doing this, I'm not moving out of my house of nearly 40 years....She often didn't know how truly sick she was. I wanted her to be included in the process, to respect her wishes and try to maintain her dignity....but......Alzheimer's. And "I love you". And...you need to be safe. "I just want my life back." she cried into my shoulder.

Mom wandered during a cold February night. We needed to move quickly.

 We're women, we shop, we compare and contrast when making a purchase, so on that level, after we started, my sister and I kept her on task. She certainly did not want to be anywhere where she'd be on "lock down". One executive director actually used those words, in front of my mother. And she talked around my mother, to my sister and I as if mom wasn't there.  The carpet in this place was visually crazy; looked like a pattern in a casino. Really bad idea when your residents have pronounced vision problems and no sense of depth perception. That one was crossed off the list immediately.

We found a place all three of us agreed upon for many different reasons. The resident to nursing staff ratio was good. The head nurse was completely current with best practices of care. They believed in NOT using meds right away when behaviors arose, there were plenty of activities-including outings. It was sunny and bright. The common areas looked like a beautiful small town. They just really, honestly cared for every one of their residents and did everything possible to make them comfortable.

Logistics are easy.

Emotions are not. They're messy, escaping our hearts in fits of tears the day we moved her into our carefully chosen care facility.

My sister, my husband and I packed everything we thought she'd want, the things she'd find most comforting: lots of her favorite clothes, photo albums, framed pics of family and friends, plenty of yarn and hooks for crocheting. Put it all in her new room with a large window looking out into a garden. We settled her in, but eventually had to leave. Mom surprised me with the "you're taking me with you, aren't you"s. Begging to go with us - home. The not understanding that this is where she was living now. The confusion. The fear on her face and sense of abandonment. She put her coat on, grabbed her purse.

 I couldn't hold her gaze, if I did I'd never stop sobbing. I felt ashamed doing this. It felt like complete and utter betrayal. I got to go home. I still had my husband. She had neither.

 Logically it was the very best thing I could do for her. It kept her safe, warm, well fed, medically looked after. And I felt like I just put her in prison, all the while telling her I loved her.

I couldn't comfort her, make her feel better, give her any sense of hope. My husband and I had to sneak out so she wouldn't walk out with us.  After we left the parking lot I pulled the car over and wept, shaking in my husband's arms.

I went to visit her a day or two later at dinner. She was glad to see me, but it felt awkward. It was the first time I saw her in not her own house. We hadn't made dinner together. Mom was in her winter coat, purse at her feet, ready to leave. There were other people with dementia who were sicker than she was. I could see how she might progress sitting in front of me, next to her in the dinning room.

I had no idea I could be so incredibly sad. I had to hide it from her, couldn't let her see how heartbroken I was. I wanted our visit to be a good one. I didn't want to upset the other residents. So we talked for a while, even laughed. When I could no longer hide my feelings I kissed her, said goodbye. Wrong thing to say. The "take me homes" started again. She was adamant about leaving. I had to excuse myself to the ladies room and sneak out again. Just...left. I spoke to the head nurse before I walked out. He told me mom was very agitated since she moved in, walked the halls at night which is ok with them, they just felt bad that she was so upset. It wasn't healthy for her. One of the night cleaning staff sat up with her drinking hot chocolate, getting to know her, trying to calm her enough to go to bed.  We talked about her plan of care and what they'd do to comfort her. Might have to start small with meds later.

After another week or so of visits, the head nurse asked me to stop coming to see her for a while. It kept her from properly adjusting to living there. My presence reminded her that she wanted to leave with me. It made her sad and agitated. "How long should I stay away?" I asked. "At least three weeks" he replied.

Gulp.

And, could I please remove about half of what I brought there for her? Too many belongings were adding to her confusion and agitation.

What?! I brought her those things to comfort her, to make it feel more...like...home!  The one I took her from....the one she no longer felt was her home....

It was actually visual clutter. She had an increasingly difficult time recognizing objects, making sense of what some things were.

Disease progression, erasing her brain.

Crap this was confusing.

But they were right and it helped. It was cutting edge understanding/treatment for dementia. So did my being away from her for about a month. It gutted me, helped her.

So...someone else was caring for mom.  I had a rather large "Now What?" bubble hanging over my head. I had some logistics with the house but that didn't involve day to day emotions. (I wrote about the house arrangements earlier.)

All of my energy, my thinking, had been concentrated on my mom: making sure she was safe, that she was eating well, grocery shopping with her, taking her to her favorite places (she no longer drove), fielding phone calls at work, hallucinations at night; it all changed. All I had to do was love her.

That was like dead stopping on the freeway.

All that time I formerly spent DOING things to take care of her was now free time. Free time, which if not filled with tasks that demanded attention, left me thinking about my Alzheimer's mom, without family, confused and agitated in a new strange place. I trusted the professionals to take care of her.
I was alone with all the feelings I kept at bay with tasks.

Now...

add packing up my parent's home of thirty seven years, getting it ready for sale while she's pacing the halls of her care home.

Our loved ones forget while we remember.

We need emotional support to work through all the feelings we repress while attending to the tasks of caregiving. When we place our loved ones in a care home there is an ocean of feelings to process.

Caregivers are infamous for ignoring their own self care.  There are definite reasons why this happens.  Alzheimer's is unrelenting, progressive, aggressive. There is no treatment to stop it's progression, no cure, no vaccine.  We as caregivers try as best we can to maneuver the huge whitewater of surprises that crash against our loved ones and ourselves.

There is often NO ROOM to take care of ourselves if we don't get help from family or friends or some kind of respite care.

We are frankly EXHAUSTED physically and emotionally from handling everything that comes at us from this disease.

When you care for someone who at some point:

can't handle their finances
can't drive
can't maintain their home properly inside or out
can no longer cook using a stove/oven
needs help grocery shopping
doesn't know if food is spoiled
needs help bathing, toileting, dressing, brushing teeth, taking medication
can't get to the doctor by themselves OR interact with the dr. properly, remembering things to do

It's exhausting!

You're often as a caregiver living two lives, theirs and yours simultaneously.
 
We also have to go to work.
It's a big challenge to take out of love and/or necessity.

Personally, I think that the first and best support to give primary caregivers is affordable or free access to massages, shrinks and respite care to go to both.

Caregiver mental health is just as important as physical health and needs to be addressed perhaps with professionals as well as support groups.