Wednesday, March 21, 2012
It’s not about yesterday or tomorrow – it is only about right now, in the present.
The journey of Alzheimer’s is unique to each individual. There are common threads but there is no manual on what to expect at what time and how to treat/handle it. I tell stories and incidences from Dad’s life in hopes of bringing reassurance to someone who might be experiencing the same thing. I also tell them as a way of releasing the tension and anxiety that it causes me as his caregiver and his son.
When Dad’s symptoms began to really surface I remember so many conversations with Mom. Most of them were times of reassuring one another that he wasn’t doing things on purpose and that it wasn’t his fault. We would continually remind him that it wasn’t his fault that he didn’t remember this or that or that he got frustrated easily. We learned to deal together. There was no manual, no internet page to look at and no checklist to follow. It was and still is a daily encounter with an ugly disease.
Recently I have been checking Dad’s phone to see who calls him each day. I’m not checking up on people who are calling but I use it as a source of conversation with him. He enjoys when people call him but he is not remembering any of them. My brother has called multiple times since Mom’s passing and when he called again two days ago my father called me afterwards to tell me he finally heard from him. Dad went on to tell me that he doesn’t remember the last time he heard from him but that it was probably before mom’s passing. The same issue applies to everyone who calls. Hopefully it doesn’t curtail the phone calls because they do lift his spirit and I know they are kept somewhere in his mind even though he cannot quickly recall it. It’s not about yesterday or tomorrow – it is only about right now, in the present.
He remembers that Mom has passed. That memory is there and waking each morning in an empty bed where there was someone else for 50+ years must be so hard for him. He does not recall the memorial service or that we even had one in the meeting room where he lives. Should I count this as a blessing because he passes that room each day and is not reminded of the event that took place there? I wonder if I would think it was such a blessing to forget that as well? A blessing? I’m not sure of that but at least it is something he doesn’t have that cause stress in his life right now…not a blessing…just a very sad, lonely fact.
He knows how to use the cell phone which is an incredible step. I would like to think that he has learned this new behavior and has embraced it because it is one of his social interactions and connections to family. He called me the other day in the afternoon…
“Hey Dad, how are you?”
“Fine, I guess. I was wondering if you had contacted the family yet about Mom’s passing?”
“Yes I did, Dad. Everyone has been notified. Is there anyone in particular you are thinking about today that you want me to make sure that they know?”
“No I was just wondering if the family has been notified but I’m sure you probably took care of that”
The call ended with the usual, ‘it sure is nice out today’, and recounting how many times he took Rita for a walk. My heart broke when I hung up the phone. I have images in my mind of him in the apartment wondering how long it has been since Mom passed, if everyone has been notified, and if we had the funeral already.
Dad still manages pretty well being alone. In fact, I think there is an element of enjoyment for him. He gets to listen to classical music almost all day, work on his puzzle book or play computer games as much as he wants. His schedule is rigid. He wakes up around 6:30, sets the coffee pot going, puts on his shoes and takes Rita for her morning walk. They return, he feeds Rita and then prepares his breakfast; a bowl of bran cereal with yogurt on top and a few slices of peaches. He pours his coffee, tests how warm it is, places it beside his chair and turns on the morning news. He returns to the kitchen for his breakfast and sits to enjoy it. Afterwards he washes and puts away his dishes, spends about fifteen minutes in the bathroom doing whatever he needs to be doing, then takes Rita for another walk, this time a lengthy one, weather permitting. He’ll turn the channel to classical music and work his puzzle book, occasionally putting his head back to rest his eyes. He will walk Rita every couple of hours.
He is surrounded by images of his wife – their wedding photo next to him, a bracelet she wore, and a rose petal leaf from her committal service. Their 25th wedding anniversary photo hangs above the couch to his right where he can clearly see it, an item he moved from their bedroom to the living room the day she passed. Mom’s urn, a unique flag covered tube, sits on the china hutch directly behind him as if watching over him and covering his back like she had done for 50+ years. Lunch is precisely at noon and will be a peanut butter and jelly sandwich and some cheese nip crackers. Dinner varies with news at 5:00 and 6:00, Rita at 8:00 and 9:30, bedtime between 10:30 and 11:00.
He talks with Mom throughout the day, looking at her empty chair and expecting her to walk around the corner to join him. He still has her coffee cup sitting out on the counter, readily available as it has been for years. Her side of the bed is untouched except to change the linens which he faithfully does once a week.
Dad is doing ok. With this disease I will not get a notice in the mail that warns me of the next stage and next new symptoms. I won’t get a heads up – it will just happen. Perhaps he will forget to eat and I’ll notice his weight declining or the opposite where he eats too much. I check the food each time I’m over, taking mental notes of how much is there and if anything has been eaten. Perhaps we’ll begin noticing hygiene issues which is why it is important for a nurse to come over once in a while to do a checkup, a light physical, looking for bruises, cuts, scrapes, etc. I told him his doctor wanted a nurse to come over – he agreed. Perhaps it will be issues with Rita which will be noticeable pretty quickly.
He is being watched – in fact I feel horrible sometimes that I watch him so much. There is an element of guilt and fear. Guilt that I know he’s not lying it’s just that he doesn’t remember facts. And fear that he’ll catch on to me or begin feeling like he’s being treated like a child. Fear that he will withdraw in to himself to protect his feelings of self-worth that are under attack every time we help him or leave him notes.
I’m constantly telling Dad things like, “I don’t want you to think I’m treating you like a child, but perhaps you’ll allow me to pre-make some dinner for you” or “that’s great that you do this and that, how about if we added this other step for you and wrote a note as a reminder”. So far we have not had an encounter where he is frustrated – I’m sure he appreciates the attention and care. I hope he does. But reality is, he doesn’t remember what we did for him yesterday or that we are coming over tonight to make dinner. He is in his routine – his schedule – and he’s committed to it.