How Is He?

Tom's love for me shows daily when he brings me coffee. Since he cannot go to store anymore, he got quite perturbed with the boys for not keeping the fridge stocked with milk for my coffee! Tom leaves us these notes to express his feelings.

Explaining how Tom is doing is nuanced. General understanding of Alzheimer's is often tied to recognition of people. There are many years of this progressive terminal illness before that impact hits. I will illustrate with recent developments.

For the safety of our family and hers, our housekeeper of almost 30 years has not cleaned our home since March. I send pay her payments a few months in advance so she has no gap in income and can use the advance lump sum to help her financial obligations. I am sure her life is as scary as ours.

Thus, Sam and Noah cleaned one afternoon weekly for these past few months. They learned ALLOT! Sam went back to college last weekend thus we are losing his excellent cleaning skills (ha!) and the many other ways in which he helped our household function. Noah starts online school this week and his virtual meetings have already began. Our home of three must now adjust how we approach the many routine tasks.

I am trying to go at the various chores for keeping our home clean differently. We are going to attempt to ask Tom to help more. We must do it in a way that does not cause him stress and anxiety. It is important for Tom's sense of worth to stay active and that he continues to contribute to the family. This is why the caregiver's role is crucial.

We have to follow some rules:

• Tom helps between 9am and 3pm because after 3pm Tom's brain does not function as well and he usually goes to bed between 7:30pm and 8:30pm
• Shift from one day a week cleaning to doing a little bit each day
• Every task has to be broken down into one simple action at a time (no exaggeration)
• Patience, kindness and a sense of humor is needed at all times (really)

I  started the new paradigm with cleaning our three bathrooms.I broke it down into 6 tasks. I would give Tom one task at a time handing him the right supplies. He would finish each task and wait for me in our bedroom to find him for the next task. Often, he and I had to wait until I had finished a work meeting or email or whatever for me to help him move to the next thing. Finishing the bathrooms was slow going but eventually he did it and the bathrooms looked awesome! And I was super grateful. And we are all helping each other which is the goal.

I do have to go behind Tom and place things back. He cannot hold in his brain where things go. The hairdryer and brush do not go beside bathtub in towel cubby. This phenomena happens all over the house inside and outside.

And each day I have tried to approach other cleaning jobs in same way. One day was clean the kitchen. Another day was to windex the glass doors and windows.

Tom can fold laundry but asks for help on where to put away. He folds towels and stuff in all different ways which is fine! Truthfully, I have adjusted to this as I am one of those people who likes everything "just so" which is my hang up. Well ...truthfully ...  sometimes I do refold ... I cannot resist ... but I am working on it!

Tom is able to load and unload dishes in/from the dishwasher with no reminders at all. However, it is a daily scavenger hunt to find where dishes are placed. Each time I open a cabinet or a drawer or even the fridge, I move dishes and utensils and spices and anything you might find in a kitchen. We rely on humor allot with this one. I only get frustrated when I am in hurry and cannot find something; fortunately this does not happen too much. 

For those of you who know me personally, you know the universe is having a field day with my compulsive organizational personality and obsessive attention to detail - seriously - oh my.

This week Tom took clean sheets out of dryer and tried make a bed himself. He could not get past the fitted sheet. His brain could not connect how to get all the fitted corners on mattress. He calmly let me know and we did it together. Tom is remarkable. He has worked so very hard to not get too down when these missteps happens; he recognizes he is doing the best he can and does not beat himself up. I admire him for this tremendous act of self-care; we can all learn from him.

Tom's ability to hold actions in his brain is not great and decreasing. His spacial problem solving is almost gone. He cannot make any decisions. His brain cannot process at near the speed of the world around him and it breaks my heart to watch his face when he is trying. This is when you will see the tears well up in my eyes.

I do keep saying that Tom is still Tom and he is. His self-care is excellent and he can get through each day independently. His sense of humor and intellectual curiosity is always there. His giant love for his family is completely intact and apparent. For all of this we are beyond fortunate and I am truly grateful.

Alzheimer's This Day

 A typical occurrence for families facing dementia.

When Younger-Onset Alzheimer's hits families, we are typically still in an active phase of life with kids and jobs and robust social lives. One of the impacted areas that is quite time consuming is changing how bills, utilities, online accounts, memberships, subscriptions, etc. are set up. Most of these things require a User ID, passwords and/or PIN numbers. For our family, ALLOT of these things were and are set up in Tom's name on his computer with his multiple email accounts and endless variations of access information. Sam, Noah and I are still changing and shifting various accounts after one and half years! I know it seems crazy.

I am going to use today's frustration to illustrate how we as a society must do better.

SITUATION

Our AT&T security monitoring automated billing did not go through last couple months. Tom had set up this particular service on a new system in 2017.  I am guessing the credit card entered online had expired. Notices went to Tom's email which we did not pick up until today. We were behind two months: July and August.

I tried to pay online but could not because they suspended our account - fair enough. So I started the process of calling customer service. I explained Tom's Younger-Onset Alzheimer's situation thus I needed to make the catch up payment AND to change account to my name. 

AT&T's response was to charge $5 for the phone help, $35 for reactivation and $100 to change to my name. I could accept the $5 and the $35 but the $100 threw me over the edge.  I reiterated the situation of why we needed the name change and the response was "so sorry but we cannot do anything." 

And I am doing all this while listening to a work conference call because these kinds of things usually have to be done 8-5 Monday to Friday with long periods of time on hold. I was flustered and frustrated and in tears. Overreacting? Probably. But this happens so much and this is when caregivers feel VERY alone. Sam, Noah and I are doing the best we can to get these things changed ... we are doing the best we can ... we are trying.

ANOTHER WAY

There is an alternative. This conversation could have been something like this "Mrs. Grimsley, we understand your circumstances are difficult right now. We want to do what we can to help. We will absolutely waive those fees. We appreciate you calling to share what is going on in your life that impacted the delay in payment. Can you spend a few more moments with me making sure we turn your service back on and get your account details changed?"

COMPASSIONATE SOCIETY

When asked what can you do, I would say help us form a society that prioritizes empathy and seeks understanding of the human condition. If you are in a position of influence, create flexible policies that are considerate and kind which may mean reducing profits. Let us all be curious about what others are experiencing; I find that much goes on that is not obvious. So much in conducting daily life seems so much harder than it has to be ... imagine if our first priority was creating a compassionate society.

CONCLUSION

I canceled the AT&T security monitoring service. Now I will figure out if there is another option. 

Huge Sigh.

Clear or Vague?

It is uncomfortable to know what to say when people you care about are going through a hard time. There are those lovely souls who have a gift for comforting others. But many of us are just fumbling through with good intentions.

And it is not always obvious what is going on with people. And even when you do know then you do not really know. Why is this so hard?

How do we show the depth and breadth of our pain and not jeopardize our ability to achieve basic needs?

How can we be vulnerable when that very vulnerability alienates us?

The cumulative effect of trauma is real and it changes you. Sometimes you get so damaged that full recovery seems impossible. Seems is another word for hope.

We are there for others in a way that becomes serial. Person after person until you stop. And then you realize it was really just a lifelong search disguised.

The act of healing can feel like a never ending process in a finite life.

"Eggcellent" Humor

Tom has a progressive brain disease thus things will be in a constant state of change for him and us. I do think Tom's frontal lobe is being impacted some as we are seeing some behaviors that are less inhibitive - teen like. I do check in with him to see how he is feeling ...

Tom says "Some days are better than others. Some days I am in the zone. And others I am far away. Usually a good night sleep and exercise helps, at least I think I am more with it. But if I go without exercise I may feel a bit hazy but hard to predict."

Tom's philosophy is "I do not think each day how am I doing. I do try to notice big things. But little things, you just have to let it go. I focus day to day on the good things like when I get up in the morning I think about the boys being here. When you told me about Sam going back to school then I got sad."

Most of Tom's mental capacity is spent on self-care, thankfully. Independently, he exercises daily, takes his medicine, reads about brain health and prepares food for himself. He just decided turmeric is good for his brain thus found it in our spice drawer and ingesting each day ... I think. He is able to manage watering outside each day, helping clean up kitchen and assisting with whatever we ask. Tom still brings me a cup of coffee most mornings which makes both of us happy!

Tom reflects on his coping mechanisms "I think I am doing a pretty good job bringing humor in. Saying funny things and acting goofy can help." The boys and I rely on humor as well. Like most families, we fall into topics that get lots of airplay. Right now, Tom seems preoccupied with how Sam cooks his eggs which Tom thinks is not optimal. Here are recent Family Group text messages from Tom illustrating his superior egg making skills and still eggcellent use of puns: 

Tom has given me permission to blog about this journey.

Compassionate Communication with the Memory Impaired

I did not write this ... sharing ...

         DON’T

•   Don’t reason

•   Don’t argue

•   Don’t confront

•   Don’t remind them they forget

•   Don’t question recent memory

•   Don’t take it personally

• DO

•   Give short, one sentence explanations

•   Allow plenty of time for comprehension, then triple it

•   Repeat instructions of sentences exactly the same way

•   Eliminate “but” from your vocabulary, substitute “nevertheless”

•   Avoid insistence – try again later

•   Agree with them or distract them to a different subject or activity

•   Accept the blame when something is wrong (even if it’s a fantasy)

•   Leave the room, if necessary, to avoid confrontations

•   Respond to the feelings rather than the words

•   Be patient and cheerful and reassuring. Do go with the flow

•   Practice 100% forgiveness. Memory loss progresses daily

•   My appeal to you: Please elevate your level of generosity and graciousness.

REMEMBER

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them... always. For example: they don’t hide things; they protect them in safe places... and then forget. Don’t take “stealing” accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills? “ “What did you do today?”) Don’t ask and don’t test memory. A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are ̶ ̶ over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not.” Ouch! Refer only to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago; offer a snack, or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days they seem normal, but they’re not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, 2) start a fun activity, or 3) reminiscence about their spouse, “I was just thinking about __________.” How did you two meet? You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (Where shall we go? What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice. “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

Call the Alzheimer’s Association Helpline if you need suggestions on handling challenging situations. 800-272-3900
© Liz Ayers, A volunteer of the Alzheimer’s Association Orange County Chapter and former caregiver