Friday, February 28, 2014

The Long Goodbye

Posted by Hannah at 12:20 PM

the long goodbyeOnce or twice a week I go and feed my mother lunch. Most of the time I fight myself to go more often…and I do…then I don’t…THEN I DO!

On occasion I see a small glimpse of her with a facial expression, smile, or movement. Memories of our past are front and center, and then reality sets in for me.

She will talk to me, but doesn’t make any sense. Majority of the time she is in her own little world that Alzheimer’s created for her.  You can only get a glimpse of her early in the day, and pretty much nothing after lunch.

She used to belong to the group that would wander the halls, and check out all the spaces her unit had to offer. Most people feel bad about the confinement they live in, but you do notice once you bring them to some place new? Their fear that you saw at the beginning of the progression of the disease quickly returns.

The stress they have at that moment makes you realize what we see as ‘confinement’ makes them feel safer. It’s not confinement to them at all… but the warmth of home.

It was plain at the beginning when mother would have a hard time finishing a sentence, or even spitting one out. I would help her along by assuming where she was going in the conversation, and gently help her continue. The days of deep conversation were over.

I would laugh at myself when speaking of the aspect of human forgetfulness we have all experienced, but this time it was to ease her frustration and fear with her own. These things helped a little, but I know both of us were still scared to death.

It was the first step of our journey of The Long Goodbye.

The words of wisdom or comfort – or heck even general conversation would slowly be removed forever. She will stare off into space now, and if she acknowledges you? She will give you her gentle smile that you remember, but the person you once knew just isn’t there anymore.

I could tell by how wobbly she was getting it was just a matter of time before she fell. Yes, she was starting to lose that ability to walk the halls and to investigate every inch of the unit. What we all take for granted was also slowly being taken from her. At first she knew what to do even as it became harder as she would sway or bobble. She would slow down, and then speed up – and slow down again.

We had a routine at lunch. I would try to keep her seated long enough for her to finish her lunch, but once we were done? She would grab my hand, and she would pull me up and down the hallway. In and out of the rooms in her part of the building, and maybe even touching furniture or items left out.

The attention span was less and less, and it just turned into an endless wander. After a while she would let go of my hand, and I knew at that point she wouldn’t miss me if I left. I wasn’t with her anymore, nor did I exist.

Just another part of The Long Goodbye.

alzhermer 2Mother’s fall did happen, and she fractured her hip. We had to make the decision to allow it to heal naturally, because a trip to the hospital for surgery at this point would be too traumatic for her.

The morphine would keep her sleepy, and that urge to wander was stifled by it…and of course the pain.

Normally, physical therapy will help a person bounce back to a point. Yet, mother at this time has to be reminded to swallow her food or drink. She can’t feed herself anymore, and much of time she really doesn't understand what is going on around her. She is incapable of learning to use walker, or cane. I do see her trying to get out of her wheelchair on occasion.

You have the urge to want to help her out of that wheelchair, because you know that desire to wander is back. You have to pull yourself back, because you know she will fall again. It might even be worse this time, because the ability to balance is gone.

They keep her in a special wheelchair that helps her balance to be upright in the chair, and I long for her to be like some of the other patients…that use their feet in the wheelchairs to wander up and down the halls like she used too.

It breaks your heart knowing that the world of Alzheimer’s has taken her in more deeply, and she has lost the ability to learn the very basics of the wheelchair. So she sits, smiles, and makes her nonsense conversations. Most of the time she is just silent.

Just another part of the Long Goodbye.

alzheimersI once had small glimpses of her every now and again, but it truly is never there anymore. She looks at my face and smiles, but she could never tell you who I was. She meets you a little and then she is gone within seconds.

I notice I’m one of the few visitors her section really gets. I’m NOT going to tell you it isn’t painful each time I visit, but I know my mother wouldn’t leave me there alone. I push myself, and most days I do just fine.

Don’t get me wrong, because I know why visitors aren’t there. I fight the urge myself every single visit! It’s hard to watch someone that once loved you look right past you. They don’t know if you were there or not to be honest. Their existence is far beyond what I’m capable of grasping, because they are in their own little world. You have to go the world of Alzheimer's, because they can’t come to your world anymore in anyway.

At times when I leave I go cry in the parking lot, or stop along the road on the way home. Then there are the days in which my mood just goes right into the ditch, and I can’t seem to pull myself out. My mother just isn’t there anymore. She is just a shell at this point. Yes, dead in way. Yet, you aren’t really allowed the cycle of mourning yet…because she isn’t really dead literally. The shell is still there, and the long goodbye is even longer.

Mother has been slowly but surely losing weight, and I know something will happen soon – even if its minor to majority of us. She will not have the ability to fight in sense we all can relate to, and then Alzheimer’s will finally have to let go. God will take over, and bring her home.

It’s been a long and painful goodbye. I hope most don’t blame me, but I hope God takes her soon. The visits are getting harder, and I can’t even explain the feeling you get when you watch your mother lose the ability to shallow. When she loses the ability to know whom she is when you call out her name.

One thing I did for myself? I had them color her hair. Mother was always one that was well kept, and groomed. (The hair, makeup, clothes – shoes and purse to match.) She used to LOVE to get her hair done, but it was uncomfortable this time. Yet, the hair color warmed up her face in such a way it made me more comfortable for HER! She was beautiful!

She once was the person that told you no one (meaning me) shouldn't go anywhere without her face on (expression meaning makeup, hair, etc), and I guess that is the last portion of control I have to hold on too. Everything else just slips through your fingers forever.

Another Step in The Long Goodbye

Did you know that they don’t know what causes Dementia or Alzheimer’s? They don’t even have anything to slow the progression of the disease. For as widespread as it is they know next to nothing about it.

There is a too much fear and stigma surrounding this disease, and what truly hurt? Seth Rogen this week made an Opening Statement before a Senate hearing on Alzheimer's Research, and only 2 senators showed up to hear him.

It’s similar to the amount of visitors that the Alzheimer’s unit gets. Sadly, I know why family doesn't come…its very painful. It tears your heart out to watch them.

What I don’t understand is those with the power that can help and influence much needed research and support don’t show up. Why bother calling a hearing at all?

Hilarity for Charity
Alzheimer's Association
Alzheimer's reading room

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Gail Wallace on 11:42 PM said...

Just lost my mom after her 8 year battle with ALZ. We grieved the loss of the past eight years as well as the loss of her physical presence being with us here on earth. Recalling memories and going through photos in preparation for her services helped me to replace the terrible memories of these past few years with better ones. ALZ is a horrific disease. I am so sorry you are going through this! I found it helpful to lament on the way to the visit for myself and to lament on the way home for my parents. Praying for you!

Mara Reid on 9:18 AM said...

I'm sorry for what you and your mother are going through.

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