Scrambled Days – Sleepless Nights- Alzheimer’s in the Family

This has been a week of adventure. My cousin, Glenda, came to care for mom on Tuesday. I had doctor appointments in Myrtle Beach. She stayed over night, allowing me to have a break for the first time in 2 months.

All went well and I came back to mom’s a little more rested. Being a caregiver to a loved one is hard. I’m showing more patience than I ever thought I could have. Caregivers have to be “on” 24 hours a day, 7 days a week. I sleep with one eye/ear open just in case mom decides to wander during the night. Showers are quick because things happen when the caregiver is out of sight.

I took mom to her PCP on Wednesday for a recheck. Something is going on with her heart. May be A-Fib. They ran an EKG, bloodwork and urinalysis to rule out infections, thyroid, etc. We have to cover all the bases. They ordered a Rollator walker and a cardiac monitor. Mom’s BP and pulse are all over the place, low to high so she’s been weak and dizzy. She is a fall risk. She kept telling the doctor,”I’m just wore out. All wore out.” She keeps talking about “going out of here.” When pressed she says she knows she is dying. I always respond,”Not today, mom, not today.”

My daughter, Jeremi, and my two young granddaughters came for a visit on Thursday. Mom was having the best day in about 12 days. She interacted with the Greats and stayed awake for the visit. She ate better and served everyone ice cream in a cone. Wow! I used this time to pickup her walker. She was too agitated to do that after her appointment on Wednesday. Mom told me that she felt better because she got two shots at the doctor. She did not.

I took mom in for her heart monitor on Friday at 8:30 AM. She asked me several dozen times where we were going and why. I answered patiently each time. Mom has lost her filter and I have now heard her curse for the first time. She is also saying many inappropriate things that she would never say before. We go with the flow. At this appointment she had trouble walking a few feet with the walker, shortness of breath and dizziness. The nurse had to get a wheelchair to move her and take her to the car. We are now trying to get a wheelchair. She simply can’t fall for a lot of reasons.

I explained to the cardiac technician that mom was in a fix it stage and that she may take the monitor apart. She has already taken apart a watch, CPAP, and a toilet tank. The plumber was here yesterday to fix the toilet. She keeps telling me that things are broken and she can fix them. The things aren’t broken until she “fixes” them. I can see this becoming expensive. I redirect many times a day but things still happen.

Mom’s screaming woke me up this morning around 3:00 AM. I ran in to her room. She was dreaming and screaming. I woke her up and she tried to speak but her words were all jumbled up. After a couple of minutes she could talk. She told me her mom was whipping her. She was so sad. I stayed with her until she went back to sleep. It’s 8:40 AM now and she’s still sleeping, crossways on the bed. I’ve been up since 4:20 AM. I just couldn’t go back to sleep.

When she awakes, I have to change the battery in the monitor and remove it for her bath. She forgets that she got the monitor and when she finds it asks me what it is. She doesn’t remember anything about this week and yesterday she couldn’t remember my daughter’s name. She is calling me Gayle a lot. Gayle is her younger sister who died of complications of Alzheimer’s the first of June. It’s sad to see her going through this.

Mom has also decided that she has unlimited funds and she wants to pay for everything. She constantly says, “I have money, I’m going to pay.” She is on fixed income and has always been frugal. I usually say, “You paid yesterday, let me pay today.” This seems to work now. We’ll see.

We are taking one day at a time. Doing the best that we can. We see her neurologist on Tuesday for an earlier recheck. Her PCP recommended that we not wait for her planned recheck in September. Things are moving so fast.

I know that I won’t be able to keep her at home at some point. Her safety is the main concern. I’m doing interviews now and forming a plan. It’s better than scrambling at the last minute and being under that pressure.

Thank you to all those in our support system. We appreciate you more than you know. You are all such a blessing.

We’ll see what today brings.

More later!