"Letting Go" By: Kate Swaffer

I am reproducing my fellow blogger Kate Swaffer's post her in its entirety because it is such a significant piece. Do, however, please visit her site for her many wonderful posts.

http://kateswaffer.com (Opens in a new window)

Letting go

Kate Swaffer / 19 hours ago 

One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.

I am not talking about physical functioning, as I was and am very used to that happening. Needing reading glasses was the first major step towards that, and possibly giving up playing squash the second!

I’m okay about my hair going grey, I’m okay with my wrinkles that mean I have lived and loved, I’m even reasonably okay living with the ongoing chronic pain of severe arthritis and other chronic conditions.

Accepting that I can no longer manage medication, nor sometimes work out how to get dressed or make a cup of coffee is emotionally debilitating. My maths ability has been impaired for some time, but now, it is so impaired others have talked about it, and suggested to my husband perhaps it is time I let go of doing more things.  Of course, we have had to go through the pain together this weekend, as it had to be brought up…

I find this to be part of the process of letting go of the many things you lose with dementia, but in contrast to when you are letting go of someone you have loved, you still have your functioning and abilities in tact. When you let go of someone who has died, you still have your functioning and abilities in tact. When you lose a job, you still have your functioning and abilities in tact. When you lose friends (except when this happens after a diagnosis of dementia), you still have your functioning and abilities in tact.

If you have ever wondered why people with dementia act in ways that are hard for others to live with, manage, accept, then please think about what it is like for us, the people diagnosed with dementia, who are losing our functioning and abilities. We are changing in ways that you are not, yes, but we are also losing so much of our identity, who we once were, perhaps even who we wanted to become.The future looks grim, and our past, sometimes even this morning or yesterday, is fading, perhaps not even to become a distant memory for some of us.

Letting go is hard to do, especially when you have nothing else to hold onto… or look forward to, which is why it is so very  important to completely ignore Prescribed Disengagement™® , and Live beyond dementia™, for as long as humanly possible.

My Reply: My heart and head cry out loud for you and all others who have gone or are going or will go through this experience. Oh that I could make it all go away, be OK or be better for you, dear friend, like I tried so hard to do for Gregory. There is no way to pet you and say it is OK. It isn't! But know that LOVE does the best it can to replace those losses. LOVE by you and for you. For and from your husband, family, friends, BLOG readers, and so many others whose lives you have affected and influenced and made better!

The Case of the Missing Strawberry Shortcake

I am sure that some of this has to do with my own disappointment. I continue to tell myself, "Don't take it personally." But I take it personally. I can only imagine how he must have felt but for me I tried to do something nice for him and it only caused more problems. I keep trying.

The other day I planned to make us a nighttime treat. After dinner I made a batch of baking powder biscuits. Then I plucked and sliced the strawberries, sugared and lightly watered them to bring out their juices, and gave them a partial mash. Finally, everything was set aside for later.

After dinner we watched some TV then went into the kitchen together to assemble our dessert. G sat on the stool and watched as I sliced the biscuits and placed them on a plate, topped them with strawberries, and loaded the creation with lots of whipped cream. Kiddingly, Gregory used to say, "The only reason for shortcake is to be able to have lots of whipped cream."

I picked up my plate, pushed the other plate towards him saying, "Bring yours," and headed back to the TV room. A few minutes later (actually a few to many minutes later) Gregory arrived with the baggie of extra biscuits that had been set aside for breakfast.

"I am confused, aren't these too many?"

"Those are for tomorrow. Your strawberry shortcake is on the counter in the kitchen," I said amazed at where a short circuit of his brain had taken him. He had watched me assemble, he saw me pick up my plate, he had heard me say "Bring yours" as I pushed it towards him, but none-the-less he showed up carrying a baggie of leftover biscuits announcing he was confused.

At times like this my brain goes numb with disbelief as I struggle to interpret what had happened, remain calm, figure out the next step, still trying not to just do it for him. Maybe I should be grateful that he knew he was confused. Sometimes he doesn't realize he is confused and behaves as if he knows what he is doing.

So he went back to the kitchen to look for his strawberry shortcake and was gone again for quite a while. Waiting is difficult for me but I still believe that it is important to allow him time to solve his own problem. Sometimes he is able to do so.

Finally I got up and went to see how he was doing. I found him looking around the kitchen not knowing what to do. By then he had probably forgotten where his strawberry shortcake was, the kitchen in his mind must be a HUGE COMPLICATED place, and maybe he had even forgotten why he was standing there.

I pointed out his plate and he said something like, "Oh that was easy." 

For him, maybe. For me, devastating.

I know, I know. You are probably thinking why didn't I wait until I was sure he picked up his plate? Why didn't I just bring his into the TV room as well? Why didn't I just go back and get his for him? Why didn't I just do all this calmly without taking it personally, letting it diminish my good intentions, causing my mind to go numb, bringing a few tears  of despair closer to the surface? That's easy for you to say.

At least this time I stayed calm and didn't get angry or say something like, "How could you not know what to do?" or worse. At times like this I have to balance back and forth between perceiving and treating him like he is normal and behaving and treating him according to his "current normal." Or figuring out in the field what to do next when what usually worked didn't work this time.

Not an easy job. I do get better at it. But my guess is that Gregory's decline will constantly my outpace improvement. The question is will I survive to outpace his Alzheimer's? Bon appetite!

The Good, The Bad, and The Ugly

Dear Family & Friends, 

Often you ask, "How are you two doing?" That is always a difficult question to answer if only because the answer is sporadic, erratic, changing, and cumulative as well as formative and summative. Not to mention joyful and devastating.

As for how we are doing, at the risk of being rude, check this ALZ BLOG. The highlights of our life live here. Maybe what the blog doesn't show as often as it should is that we are coping and getting through our days successfully even though Gregory continues to decline. 

I keep reminding myself to post some of the good stuff but usually the blog is a place for me to turn to to find a sympathetic ear if only it is my computer and to process my thoughts and experiences. 

Hope all is well with you and as always, Gregory and I look forward to seeing you.

m&g

A List of the Good

Have watched several great movies on NETFLIX like "Little Ashes" and "Departures."

Saw "Man of la Mancha" at Light Opera Works in Evanston.

Met with a friend for a 4 hour interview and looking towards the possibility of being included in her book on Gay Issues. More on this later.

Next week we are "light walking" as part of tech rehearsal at the Lyric Opera of Chicago in which we receive free dress rehearsal tickets to all of this season's operas.

Planning on having some of the condo painted after five years of gentle and loving use.

Tonight are going to the Carillon Concert at the Chicago Botanic Garden.

Continue to create interesting (if not photogenic) dinners and baked goods.

Got good reports on our recent whirlwind of yearly medical check up, eye examination, and dental cleaning.

Continue to feel blessed about so many parts of our life.