It’s interesting to re-read journal entries and edit them a bit, before I post them here.  I’m an only child baby boomer who has elderly parents dealing with dementia/Alzheimer (Dad-93) and short-term memory loss (Mom-almost 89).  We live 400 miles apart and I pretty much divide my time between visiting them and trying to maintain my own life here in mid-Missouri.

I’m just beginning this journey, and compared to other families, I think I have it fairly easy.  Mom can still live independently…and I am retired by default, so if there is some emergency, I can visit them to assist.  I am amazed when I read posts on Alzheimer.org and learn about other families’ situations when a loved one suffers with some form of dementia.

I highly recommend the book:  The 36-Hour Day by Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H.  …. “A Family Guide to Caring for People Who Have Alzheimer Disease , related Dementias, and Memory Loss”  Bought my copy from Amazon.com.

So….Parental Journal 05:

Parental Journal 05 March 27 – 28, 2015

The missing toothpaste caper. Who’s the one with memory loss?? I could not find the toothpaste yesterday after breakfast. I looked everywhere in the bathroom. No toothpaste. Mom’s been misplacing things and I decided not to send her on a search throughout the house for the tube of opened toothpaste. It could wait. When I mentioned it in the early evening, she looked but could not find it. Then I went back upstairs and a light went on in my brain: check your make up bag, Jenny. Sure enough. When gathering stuff to put back in my bag, I included the toothpaste. Mom thought it was hysterical….and it certainly was, as my students would say, “My bad.”

Mom was worried and quiet this morning. I just let her talk, and it all focused on getting Dad home. Kept my mouth shut for a long time, and then I had a firm but gentle talk with her about how I would worry if she was home with Dad and fainted or had a heart attack. Dad cannot use a phone or walk…so what would happen? Would Dad want her to suffer and wear herself out taking care of him? She’s been his caregiver for years…and giving up that role is always extremely difficult for a spouse. It’s something her best friend, Barbara, had to do and Barbara adjusted. My concern is the safety and well-being of them both. I want her to have enjoyable and relaxed times with him for the time they have together. I’d like her to have lunch with the few gal pals she has left…go shopping for things she or Dad might need…experience new restaurants… go see some movies, etc. She listened without interrupting. We were quiet for a while. Then she said, “Dad is close and it’s a nice place.” She totally stopped talking about getting him home…for now.

We visited a bank, went to the library so she could get some books to read, visited Dad, and then went for Chinese at a local restaurant. We agreed it was awful and we would not return. I promised to research other Chinese restaurants in the area.

During her visit with Dad she told him, “Victor. I’m disappointed in you. You’re not doing your therapy. I need you to do your therapy so you can come home. Do you understand? Look at me! Do you understand?” No real response from him. She got up to ask someone in the therapy department a question and then I leaned over and said to Dad, “Boy…you are in big trouble. She wants you to practice walking.” He looked at me, but other than that…no response.

During lunch, Dad was quite sleepy. Before his salad was brought to him, he picked up a spoon and tried to get something from the tablecloth…several times. He knew what to do with a spoon, but there wasn’t anything there yet. Did a great job with the salad…but slowed down with lunch and was rather unresponsive. Mom tried to coach him…even tried to feed him a bit so he would start eating himself, he was very sleepy. We took him to his room and the staff put him to bed for his afternoon nap. We always kiss him good bye and tell him, “We’ll see you tomorrow.”

After our late and unsatisfactory Chinese lunch, we came home and I had Mom write two checks. She has only just begun to write checks in her mid-80s…and only rarely. It took her a while because she gets nervous, but she had me check what she wrote and overall it went well. Two local utility bills came in the mail and I set them up for auto pay. She’s quite excited about that…at least for now. I’ll need to remind her of how it works when she receives notices of bills that were paid. She will think they are bills.

So it’s after 5 p.m. and she’s been fine overall. Most likely tonight or tomorrow morning she will again begin her plans to bring Dad home. I’ll continue my song about wanting them to have quality, safe time together. Meanwhile, she’s doing laundry and ironing his clothes…happy as a lark because that is something she can do for him.

Today we also met with Peggy, the Director of Social Services. Dad’s power of attorney for health states no extraordinary measures…but when he was admitted, my mom signed a form that requires staff to resuscitate no matter what…hook him up no matter what…and all that. Last night I showed her how the form she filled out did not match Dad’s wishes, so today she signed a new form that is more in line with his power of attorney for health. She’s quite comfortable with that correction, and the director is relieved as well.

Today I spent time with “Bebe” a small, calm, quiet Shitzu (sp?)…cute as a button…brought in by the son of a lady who has Alzheimer’s. I met Bebe yesterday. Fell in love with her today. Hope I get to see her tomorrow.

Sat. March 28, 2015

Mom received a call this evening from a long-term friend, Evelyn, who said her husband has three weeks to live and is in hospice care at a hospital. Mom and Evelyn have been close over the years. Interesting to hear Mom coaching Evelyn on the benefits of having others care for the men (Dad and Lou)….it’s best…”we’re too small to take care of them….You have done all you can for Lou all these years…you need to take care of yourself…your children are there to help you …and Jeanette is here to help me”….etc. Mom did a wonderful job comforting her friend and giving her the advice and reasoning several of us have been trying to give to Mom.

Another cousin of Mom’s….wife of a cousin…Laura… is dying of lung cancer. Her time is very limited now.

Another relative, Grant, who moved to Las Vegas has Alzheimer’s and other health issues. Not doing well.

Mom continually thinks of these other situations, and I think they have helped her adjust to her current situation.  It’s just so damn difficult for her to be away from Dad after they’ve been together under the same roof for 60 years.

I came downstairs after a nap this afternoon. Mom told me she had bad news. She lost her driver’s license. We organized her wallet two days ago, as well as another card holder thing she uses. What I’ve noticed is that she begins to think about something, and the next thing I know she has cards and stuff all over the table…closely examining each. I figured she had moved her driver’s license to the card holder, and sure enough, there it was. So we organized her wallet again…keeping essential items there…and putting other things in the card holder. It will get all mixed up again…and again…and again.

Nice visit with Dad. We sit with him during lunch while Mom hovers, coaches, and directs. He ate a lot.  He’s receiving medicine to increase his appetite, and he sort of goes into auto pilot when food is put in front of him…or when he sees a spoon or fork and thinks food is there.

Before lunch we sat in a common area and a lady I had not seen before was there. Her feet were bandaged, but her toes were sticking out. She had very long toenails and got around by herself in a wheelchair. She started visiting with Mom and I could not help but write down what she said:

Said she had a husband for 57 years who brought her nothing but grief. “Alcoholism destroyed everything.” Pointing to another hospital guest, a quiet fellow named John, she said, “That’s my boyfriend over there in the brown shirt. He gives me diamonds.” Mom looked at me with a questioning look and I just chuckled and kept writing. The lady went on. “I have a big mouth like my mom, but I’m glad. I’m writing a book about my life. You should read it sometime. I’m telling the truth about everything. My name is Marilyn Monroe. You know, you have to make your own happiness.” She thought my dad was my mom’s son. “He’s 92!! My God!! Tell him to get out of that chair and do something! We had a band playing here last night. Best therapy in the world. Victor reminds me of the story of Rip Van Winkle. Thank God he’s handsome. I saw Rip Van Winkle in a bar one time, and my God, he looked awful! We’re going to have Mexican music later today…and polka. I can make a grown man cry.” Then she got up out of her wheelchair and went over to an adjacent area where she had some cottage cheese.

She’s right.  We have to make our own happiness….and the next time I’m at a bar, I’ll take a look around.