Forgotten

Today I visited my mom once again. Truthfully, I hadn’t been to see her in a week. I had this dry cough / sore throat going on and it seemed like a reasonable excuse at the time. Up to very recently, I have worried about her endlessly and beat myself up about going to visit her or not. However, this past week I am ashamed to admit that I barely thought of her since Tuesday and I really didn’t worry about her. I felt little guilt this week as well. I hope this will continue but at the same time I feel guilty about her being in the home all alone.

I went today and she was very sad and well, drugged. Staring into space, fading out, didn’t try to have a real conversation. She just really seemed depressed.

She said “I don’t want to be myself.”

“Why?” I ask as I sit on the edge of her bed and take her hand.

“Because I am so lonely. I am by myself. I don’t know what’s wrong with me or how to fix it.”

“I don’t know either mom,” I reply hopelessly. How can you tell someone it is not going to get better, only worse?

I tried to get her comfortable in her bed and encouraged her to rest. It was mid afternoon and rest time. Really, it was a selfish purpose. I wanted to see her at peace, sleeping, so I wouldn’t see the pain and sadness in her eyes. And so I could leave. After all, we had several errands to run and time was quickly passing. Really, Tracy! Is a half hour or an hour too much to ask to give her company? This summer I vow to try to visit her every day, to hold her hand, to show her pictures, to talk to her and sit quietly beside her. Maybe I will bring some peas to have her help me shell. Or some beans to snap. Something comforting that she used to do. Maybe she could grow a tomato plant in her window and eat it’s fruit.

I don’t know if my visits will bring her any joy or an end to her sorrow or if the visit helps her for the day as she likely forgets minutes after I’ve left.

But I wish this guilt would turn into something else. Something more positive. Something less selfish. Something I could eliminate and replace. What that is – I don’t know. All I know is the stained glass is quite grey today.

A Busy Mind

One thing I am quite surprised about is the number of thoughts my mother shares in a short time period. Sometimes she will sit quietly or she will eat quietly but then there are other times that she is clearly thinking constantly. Today was one of those jumbled thought-following-thought monologue that she often uses to communicate.

The thoughts go something like this: “These people are terrible here! They won’t help you and they won’t give you a ride even though you ask them. No one will be your friend. You ask them and they say “No, we won’t be your friend.” I went to visit Queenie today (passed on over 20 years ago) but I don’t know, They wanted me to go some place to buy some thing but I said ‘no, I can’t do that today.” They don’t feed you around here and when they do it might be poisoned. There’s murder going on around here! I don’t know who, but there is. They are terrible. Things have really changed around here (what – in the 1 month you’ve been here?) Ever since those little children drowned in the States the other day. (Who said ‘squirrel!!’) I said I had to go to work but no one would take me. I never get to choose what to eat.” I said, “It must be nice to have someone cook for you so you don’t have to cook at home!” “Not for me it isn’t!!” That little bit of dialogue about cooking was one of the few turn taking parts to the conversation. She just wants to talk and she seems to resent my questions or expressions of concern. A listening ear I will be. The negativity can be a bit overwhelming, though. I left feeling more than a little sad and discouraged. She isn’t able to hear my own concerns or understand my stories. That mothering role has been lost.

If I ever wondered if the window she sees through is a simple, cloudy pane of glass I now know it can sometimes be more like a tapestry of carefully shaped and vibrant colours of a stained glass work of art. I may not understand how the pieces fit together and maybe it doesn’t even matter if they do. They are the rich memories and experiences she has lived all the years of her life and they are hers to remember. How they come bubbling through the brain that can’t make connections, I can never predict. I guess I could consider that some of the adventure of visiting my mom.

Today she is cognizant. Unfortunately.

It sounds like a horrible thing to say – “Today she is cognizant. Unfortunately.” Isn’t being cognizant what we hope for every time we visit? That she would be present or “in her right mind.” That we would have meaningful conversations with her? That she would remember my name and the names of my family members? We could all laugh together and pretend she hasn’t been put  (cast off or institutionalized, jailed, abandoned) into a care centre where she will never “go home” from.

Maybe it is better when she doesn’t know what is going on or where she is and it doesn’t matter all that much because her brain in misfiring and she is happily in another place or time.

Today she knew exactly where she was and she was desperate to go home. She thought I was there to take her home and when I said we weren’t going anywhere she sobbed. It wasn’t a little cry where a corner of a kleenex would be enough. No, this was a pass the box over and get some more kind of sob. It was so very hard to see. I held her in my arms but she wanted to know why. Why couldn’t she go home? The other people in the home said they were going home and why won’t her own family take her home?

I tried to give excuses – the doctor, her cough, her foot pain, etc. But she wasn’t going to accept that.

So, with tears running down my face I told her that this was the best care for her, that she wasn’t doing well at her home to which she responded that she can take care of herself and make a salmon sandwich.

I didn’t tell her that she didn’t know where anything was in the kitchen or even where her bedroom was. I did tell her that when she was there that she asked several times a day to go home. She said but “my family is there.”

I said that we were visiting her every day at the care centre to which she responded it wasn’t the same. She wanted her home.

I said, “Remember when dad had his heart attack?” She did. I said the doctor was concerned about his health caring for you.

She wanted to know why they couldn’t hire someone to come in the home and care for her. I said we’d need at least 2 people plus dad to care for her at home over 24 hours.

I said that she left the house in the middle of the night and that we were afraid she would get hurt. That this care home was what we thought was best for her.

She sobbed some more. I told her that this was hurting us very much, too. That I wished it could be another way.

We’d sit in silence for a short while and then she would cry some more.

I asked if it was really so terribly bad here? She said no, but it wasn’t her home.

“Why did this have to happen to me? Why would God let this happen to me?” she asked. My words of “we live in a broken and hurting world and these things just happen” didn’t bring much peace to her anguished heart.

I think that Home is in the heart. It is wherever loved ones are. When she says she wants to go home, she doesn’t really know what that looks like but her heart is searching for loved ones remembered in her heart – not her mind, but in her heart. A deep, desperate desire to be at a place where she is with loved ones passed on and present. I can’t get her to this place, I can’t take her “home” where she is longing to be and it hurts like hell.

The only one to bring peace to her jumbled thoughts and longing heart is God and I don’t think she knows Him. And where is the peace and comfort I so desperately want? Where IS God?

Lucky Leopard as posted on Nurse Bitterpill

lol

Nurse Bitterpill [dot] com

Patient: “Help! I need help.”

Nurse: “What do you need?”

Patient: “I need something that can turn me into my neck.”

Nurse: “Do you have a sore throat?”

Patient: “Yes. And a leopard named Lucky.”

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Good Hearts Originally posted on Nurse Bitterpill [dot] com

Profound, really.

Nurse Bitterpill [dot] com

“It’s difficult to see the agony of people with good hearts.”

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Through Stained Glass

I am perplexed but fascinated with the human mind. I am always eager to talk with my mom to see where her mind goes. I used to really wonder which “time period” of her life she was in at that moment, but it is never really clear. At this point, I think there are several possible genres which her memories come from: early years growing up; young woman married or unmarried; young mother and I’m not sure about a genre past that. Perhaps the newly imagined.

One of the most fascinating experiences is that she often makes up memories depending on what she hears in the room.

One time she must have watched a program like “Save the Children” in Africa earlier in the day or week. Suddenly she began telling this very sad story about these children she saw that didn’t have shoes and they wanted something from her – probably candy because they have so little…. While she had previously seen this show, she was now telling about it as if she were there seeing it in her own eyes. While she is telling me this sad story, my sons are across the table talking about an actor, let’s say Johnny Dep (I can’t remember, tongue in cheek) and suddenly, in the middle of her story she stops and says emphatically “No, I don’t think Johnny Dep was there.” Then she continued her conversation. I was laughing so hard I nearly cried and she was happy to laugh right along. To her it made total sense that she would inject that comment about Johnny Dep into her otherwise unconnected conversation on needy children and keep on going without a pause. Isn’t the brain interesting?!

What is also fascinating is the brain’s ability to seemingly combine memories. A little bit of that, which sparks a little tad of this, and wham – a new idea that she attempts to tell us about. Sometimes I think that her brain comes up with entirely new things that she then tells as if they were a memory.

Her memories have a lot of general words “they” “he” “she” “them”  I suppose each of them are general enough to be anybody and because she is remembering something but cannot fully remember, people are generalized. We “normal” memory people do the same sort of thing “Oh, remember, uh, um, you know – them!”

She will often “fixate” on one idea or memory for a period of time and then suddenly it becomes something else. It is so interesting that she can “remember” one idea long enough to repeat it over and over sometimes for hours and sometimes for days. The other night when we were visiting for Easter, she kept asking when we were going to the other house? Upon further conversation, we were able to sort of figure out that the “other house” had people in it that she didn’t know and didn’t trust and she felt an urgency to get up and go. She brought this up several times so finally I sent my sons to walk over to the “house” and see what is happening there. They came back and reported that there were only 2 people there, sitting on the couch eating pizza and it all seemed okay. When they were reporting it to her, it was clear that she didn’t know what they were talking about but she didn’t mention the need to get up and go check on the house anymore. Who knows what really interrupted the thought pattern that time.

One of the most important things I have learned when communicating with someone with Alzheimer’s is don’t argue. Their thoughts are not rational and they are unable to reason. The caregiver will get as frustrated as the person with Alzheimer’s. Going along with their thoughts or trying to distract are the two strategies we have tried that work best on many, but not nearly all, occasions. The caregiver will require patience beyond belief to answer kindly as if it were the first time, not the thirteenth time, that they asked how you are doing.

What she is seeing through her stained glass window I may never know. But what I do know is that she can tell me all the stories she wants, and I will listen. Really listen. Why didn’t I start earlier?

The Hokey Pokey

You put your right hand in, you take your right hand out, you put your right hand in and you shake it all about. You do the hokey pokey and you turn yourself around, that’s what it’s all about! A childhood favourite still played and loved today at our preschool!

Sometimes when my mom goes and attempts to dress herself (usually because she has to go to work and “they” are here to pick her up), she is found trying to figure out why the clothes aren’t fitting quite right. One time my Dad went in to check on her as she was in her bedroom for quite some time and he found her in a peculiar state of dress. She had one shirt on one arm, another on the other arm and her head through her pajama pants – through the leg hole! Thankfully, help had arrived and she was dressed with a little reorganizing of garments. Another time she had dressed herself with a shirt over her pj’s and nothing on the bottoms. We chuckled, slightly horrified, over that one for a while. What is that saying – “If you don’t laugh, you’ll cry?” This has certainly been my refrain during the last few months. A little humour provides a breath of fresh air through the still air of sorrow. Laughing feels good when not much else does.