Tuesday, May 19, 2015

STOP BANGING ON THE DOOR!

I thought I would continue my story about taking my mom to the Day Enrichment Center a couple days a week.

We had an appointment this morning with the nurse for an intake assessment and I hoped that when we got there my mom would get the feeling she had the day she was so excited about being there that she talked about it all the way home. 

I wasn't going to tell her where we were going until the last possible minute. Maybe not until we pulled into the parking lot. 

When she got up this morning she had a migraine. 

Plan over.

I gave her something for her headache, sat her down in the recliner, and left the room to call the Center to let them know we would not be there today. 

I told a friend that it just didn't seem like it was meant to be. Every time I think it may work out for her to go to this center, God slams the door in my face. Should I give it up, or stand out here banging on it yelling, "Why?" 

I'm mulling it over. There must be a reason that things just aren't working out. It's a nice place that will keep her mind and body active. Her doctor recommends it. She enjoyed it, at least part of the time she was there.

I don't like to accept that it's not the place for her, but things are just not coming together. She didn't like it at first, then when I thought maybe she liked it, she said she had a terrible day there and was terribly upset on Friday, and now she has a migraine when we have an appointment for her assessment.

Okay. I just have to accept the fact that it is just not right for HER. 

I was getting into the accepting idea, (although not excited about it) when I opened my computer and read an article by Bob DeMarco from the Alzheimers Reading Room  who said "We are constrained by our own brains. We the caregivers have a tendency to give up, or to stop trying. Our brains tells us - we can't do it. Our own brains can be our biggest enemy when it comes to effective, loving, caring."

So here's my conundrum for today: Is the door truly shut, or am I  giving up too soon? Should I be persistent and try ONE MORE TIME, or should I STOP BANGING ON THE DOOR?

Sunday, May 17, 2015

The Enrichment Center

A Social Worker suggested I take my mom to a Day Enrichment Center a couple days a week so I took her to one nearby to check it out. We sat out in the foyer waiting our appointment for a tour of the facility. She was immediately defensive. "What am I here for?"

It was a lovely new building and as we entered the activities area we saw a woman singing to the participants and most of them were dancing. They looked like they were having a great time.  I thought this looked like a perfect place for her to spend some time being social, active and exercising her mind.

As soon as we sat down to talk to the intake person, my mother let her know that she did not live in this state, she was only here visiting, and it was time for her to go home now. I wondered if this woman had ever heard that excuse before. During our course of conversation we found out that it was not a lock down facility and decided it was not the best place her, she would most likely try to walk out to find her way home.

She was very agitated when we left and she informed me in no uncertain terms that she would not go to this place.

I thought I had a really great idea. The next time I would check out a Day Enrichment Center alone and if I thought it was the right place for her, I would just bring her there without telling her where she was going.

Very soon afterward I found a place I thought would be perfect for her so we set it up for a trial week a few hours a day.

On Monday I took her there and she said "What are we doing here?" I said "We are just here to check this place out and see if you like it." An employee met us at the door and stole her away while I did some paperwork. I kept looking out to see how she was and she seemed fine. She was having coffee and talking with everyone at the table. When she wasn't looking I sneaked out the door. I picked her up in a few hours and she said it was okay, the people were nice, but she didn't want to go back.

The next day we got ready and we were getting in the car when I made a huge mistake.

She said, "Where are we going?"

I said, "we are going back to the center where you were yesterday."

"Oh no, I can't go back there."

I said "Why not?"

" I don't like that place."

"The doctor wants you to go there. He thinks it will be good for you to socialize and exercise your body and your mind."

"I can exercise at home."

"I know you can, but it's more fun to do it with people. I think it will be fun."

"Then you go."

"Come on, Mom. It will be good for you."

Then came the tears. "I just can't go today. I don't feel good. I have a headache." Then came the chest pains...

So much for that idea today.

I took her to the Cardiologist that afternoon and to the Neurologist the next morning. The Neurologist encouraged her to go to the Enrichment Center explaining that it would be good for her and she would like it once she got used to it.

On Wednesday morning her Sister -in - Law came over to help out and we told her she was going to "therapy." She got in the car, but when we got to the center, and her Sister-in-Law opened the door Mom told her she didn't want to go in there that she wasn't feeling well. After much coaxing she went in and when she entered an employee saw her right away and called out to her that she had something for her to do. They decided to treat her like she was a volunteer and make her feel like she was helping them out.

When I picked her up that afternoon she talked all the way home about how she helped them out today and she had a good time. Wow! I couldn't believe it. Maybe she would be okay there.

On Thursday I told her that I was going to drop her Sister in Law off at Therapy again and then I would pick them both up later. When I picked her up she told me how kind all the people were to her there. And she actually had a good time!

On Friday, her Sister-in-Law come over just in case we had to go with the therapy story again. She was very reluctant today, but went inside. The nurse called me about an hour later and said "Your mother has a headache." I wondered if she really had a headache or if she just wanted to come home. The nurse gave her a Tylenol and I waited to see if I would get another call. After a couple hours I picked her up. She cried all the way home and for some time afterward. "I've lost everything. No one cares about me. I don't have anyone or anything anymore. This was the worst day of my life. I told those people I'm not coming back there again."

They were playing drums when I took her in, and she doesn't like loud noises, so was that upsetting to her; did it really give her a headache, or, was this a control tactic?

Did she really think this was the worst day or her life or did she think if she said it was I wouldn't take her back?

I know there were times that she enjoyed it... But then she hated it.

This morning she said "I would go back to that 'place' and help them out again, but I'm going back home."

What do I do now? Do I take her back and try it again, or do I give up this idea completely?





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Saturday, May 16, 2015

The Beginning

It began about six years ago. My mother would call me on the phone and say "What time are we supposed to come over tomorrow?" I'd say "3:00." We would hang up the phone and a half hour later she would call me back and say "What time are we supposed to come over tomorrow?"

I started talking to her about getting checked out by a doctor. She'd say, "What for?" I tried to to gently explain to her that she was starting to forget things. It's a difficult thing to tell your parent that their memory is failing. I wonder if it would have been easier to tell her she had a physical disease. She would tell me that she was no worse than her husband and if she really wanted to remember something all she had to do was write it down.

She said "Why do I care if I have a disease that makes me forget? If I do, I won't remember, so I won't know it, and it won't matter anyway." And she laughed it off like it wouldn't matter. I think this was her way of protecting herself and not letting me know that she really was afraid. How could she not be afraid of forgetting where she lives, and who she is, and who her family is? She had no idea when she joked about it of the pain and stress it could cause her in her near future. None of us did.

She went in for cognitive testing and we were told she had "Mild Cognitive Impairment." That didn't sound too bad. Sounded like a part of normal aging. No one told us this could be the first sign of Alzheimer's Disease.

I remember being in the doctor's office with her one day, and he handed me an Alzheimer's pamphlet and told me to make sure I was spending at least 40 minutes a day walking because it was an important step in fighting Alzheimer's Disease that it tends to run in families.

What?? I thought she had Mild Cognitive Impairment. She has Alzheimer's Disease?

She began all the normal Alzheimer's drug treatments and she was allergic to all of them except Namenda, which she is still taking, plus a couple  of other meds to stabilize her mood and calm her down. Medication is such a huge issue because everyone reacts differently and she seems to react opposite of what the Non-Alzheimer's patient does to medication. Meds that should calm her down rev her up. I read somewhere "if you have seen one Alzheimer's patient, you've seen one Alzheimer's patient." They are all different.

I decided to start a blog about my mom and our journey together in hopes that someone in the group of 15 million unpaid caregivers of Alzheimer's patients in in the US could relate to the struggles my mom and I are going through.

In wondering where to begin, I thought to tell our story from "the beginning" would be a good start.