Bureaucracy! – Alzheimer’s in the Family

After the complete bust on getting needed information on Wednesday, we had a quiet day at home on Thursday. Jackie cut and “twisted up” mom’s hair.

On the way over to the shop mom decided to take the Rollator up the steps instead of using the adjacent ramp. I guided her over to the ramp and she reluctantly used it. It was the second time that she made this choice. She looked beautiful after Jackie finished her magic. She said mom was pretty talkative, which she hasn’t been of late. Thank you Jackie for all that you do. We appreciate you.

Later in the afternoon, mom was visited by young cousins who rode over on their dirt bikes. Mom has known Landon since he was born 12 years ago. He has always called her Granny Joyce. She did not know who he was. In fact, she thought he was Aunt Brenda’s grandson. The boys didn’t stay long after that and I told them that it wasn’t personal, it was mom’s disease. They acted like their feelings were hurt. Too young to understand the ravages of dementia. I was sad for mom and for Landon.

Mom has been sleeping a lot over the last few days. Alzheimer’s experts say it is common in later stages of the disease. The brain needs sleep to heal but healing is impossible with Alzheimer’s. She is sleeping about 10 hours during the day. I offer meals when she is awake. Sometimes she eats and sometimes she doesn’t. She had gone from 205 pounds to 162 since June first. This too is part of the disease. Now, when she does attempt to eat, she pockets the food in her cheeks before she eventually swallows. There will come a time when she will be unable to swallow. Sad to say.

Mom’s BP is very low normal but the cardiologist said not to worry about the BP and to be concerned about her pulse rate. Her pulse is staying from 43 to 52. When it’s below 50 I’ve been instructed to withhold one of the heart meds until the pulse gets to 50 or above. Mom is not a surgical candidate so our only option is controlling the A-fib with meds. Nothing can be done about the 4 leaking heart valves. We do what we can.

Glenda came to stay with mom on Friday so that I could try again to get needed certified paperwork. This included driving to the Pitt County Courthouse (1.5 hours away), Social Security office in Fayetteville (1.5 hours from Greenville), then Clinton to cancel mom’s car insurance (40 minutes from the SS office). It was going to be a long day. Many thanks to Glenda for helping out. She and Eugene have been a Godsend. I appreciate them so much.

I arrived at the Pitt County Courthouse and went through security. The courthouse was extremely busy. I was directed to the office to get mom’s certified divorce papers and yet again was sent to the wrong office. Seems to be a theme in the wading through the bureaucracy. Good thing, the offices that I needed were all in this build, once I got to the right place. I was happy to leave with two certified copies. Happy Day!

I stopped at Office Depot and got copies of all files that I had to drop off at the Social Security office in Fayetteville. While in the office last week the Supervisor who helped us told me that I could drop them off or mail them. Dropping them off was supposed to get the approval process started a little quicker.

Well, that sounds easy enough, doesn’t it? Well, welcome to the bureaucracy. I drove from Greenville to Fayetteville for the folks at the SS office to refuse to take the paperwork. The Supervisor was on vacation and the professionals? in the office refused to take them. I asked to speak to his supervisor and he/she was out also. The security guard and others in the office said,”He never should have told you to drop them off.”

How did it become my problem when I did exactly how I was instructed? I went to the post office next door and handed the envelope to a gentleman who told me it would arrive at the SS office on Tuesday. I did thank the folks in the SS office for wasting my afternoon. They weren’t happy and neither was I. I will be writing complaint letters when mom gets her letter of approval, not before. I don’t want them to have any excuses for delaying or disapproving her application.

After finishing in Fayetteville I was off to mom’s insurance office in Clinton. In N.C. you have to go in and sign paperwork to cancel car insurance. I brought the power of attorney, which they copied, signed on the dotted line and voila the insurance is canceled. I’m finding that there are no shortcuts nor easy ways to handle things. This adds stress to the already stressful life of dealing with Alzheimer’s in the family. It should be easier and I will be addressing all this with the powers that be at a later date. A pissed off caregiver can become a

pissed off, loud mouthed advocate for change.

The chores were done for the day. I got to mom’s around 4pm. Glenda said the day went well and that mom had slept a lot. I sincerely thanked her for her help.

I fell asleep on the sofa around 8:15 PM and woke up at 10. I told mom that it was time for bed and she went without an argument. I slept until 7 am and still woke up tired. Mom got up around 8 am and got dressed for church (it’s Saturday) and she though it was 2001.

We got back to Myrtle Beach around 3pm. Mom does so much better here. She really does but she wants to be at her house, although at times she asks to go home when she is there.

Ilona kept mom for me to get out and I spent the night away. I slept straight through until 9:30 am. I feel the best I have in days. Rested. Mom got up at 10:45 and had some yogurt. She’s been asleep almost all day. Her pulse was 47 this morning so I stopped the metoprolol until it goes up to 50 or above. If it doesn’t go up it’s a call to the cardiologist and perhaps a trip to the ER.

This is our new normal. Full of stressors and small blessings. Each day is different and each day I look for the blessings. I appreciate my family, extended family and dear friends. I couldn’t do this without you. Thank you all.

More to follow!

One thought on “Bureaucracy! – Alzheimer’s in the Family

  1. Hurry up and wait seems to be your “normal”. Praying you will soon hear from the attorney in SMITHFIELD
    . SHELIA said they are great. Thanks again for my flowers. Love you both so much.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s