On November 13, 2010 I gladly became the primary caregiver of my mother. She has Lewy Body Dementia, the second most common memory loss condition after Alzhiemers. I knew nothing about Lewy Body Dementia until I brought Mom to Indiana to live with me. My mother is a resident at the Waters of Covington, a rehabilitation center near our home. I would like to have her live with us but her care is more then one person can provide. The staff at the Waters fell in love with Mom immediately. She may be losing her memory and her ability to care for herself but she hasn't lost her sense of humor or her gentle grace. This blog is meant to be a journal of our days together.



On May 15, 2011 My Mother peacefully and fearlessly passed into the here after. Now I journey alone, yet not alone. I have a lifetime of memories.




Tuesday, May 31, 2011

I Want to be Positive -- I really do

It's been two weeks since Mom died and I still feel like I'm locked in a bad dream. I haven't heard from my sister or brother since the day Mom died and I asked for help with her burial expenses. The burial expenses are paid but our finances are stretched to the very limit. Actually we are going to struggle for a couple of months. So, I am angry besides the hurt of missing Mom.

She is in that awful little black box. I want to take her back to Minnesota and we are stretching everything just to get by. Car died, truck died, checks bouncing, bills not being paid, Mom's clothes in plastic bags still in the living room I haven't made myself take care if them. I keep wanting to see her, touch her, talk to her. I want to stop crying.

Somedays are actually normal. But others--I wake up missing her. I honestly don't know if I'm mourning or worrying over the finances.
Either one by themself is a pretty big problem. Together they are too much. Myron keeps telling me, we've been through worse. Maybe--
I just wish I could wake up.

We signed Mom up for hospice services the Friday before she died. They offer bereavement services for 13 months. I am going to take advantage of that. If nothing else it will be a chance to say how I REALLY feel without being judged as faithless.

If there is one thing I have learned through having cancer and now loosing Mom is having "faith" does not keep you from being normal. Having faith means there is ultimately Someone to help you through. It's the going through with grace that sets us apart not the idea of escaping the pain. If I didn't cry for Mom, I would be heartless or at least sick. Crying is not defeat. Not being able to go on -- now that is defeat.

- Linda Shumaker uses BlogPress from my iPhone

Thursday, May 26, 2011

Making Progress

I'm actually proud of the progress I am making at work. The key is still not to push too hard but to keep moving. I am actually catching up. But, I have SLOWED DOWN a lot.

The second key is DO NOT THINK too much. Only about what is on my desk. It's working. Thanks CR, couldn't be doing it without you.

Walks

I have been taking the time I would be reading to Mom to walk. Often I start out crying but almost always I end up feeling better.


Mom was a prayer warrior. I took this a few days before her death.



Just getting started.




I took this picture because I was thinking about how out of reach Mom was. The closed gate seemed to visualize how I was feeling.




They're real pretty but no smell.
Linda Shumaker uses BlogPress from my iPhone

Wednesday, May 25, 2011

Day 10

Last night was just as aweful as I imagined it would be. The furneral home director came to the door and handed me a black plastic square box the size of a coffee can. I looked at it and thought this can't be what used to me my mother. I cried.

I tried to do my homework but the black box kept coming to mind. I watched Idol. I didn't enjoy it or do I care who wins tonight. I finally just went to bed.

This morning I forgot to feed my cat. Poor cat. I will feed him when I get home tonight. It looked like rain so I took my umbrella with me and I went to my favorite place to walk. It took me 15 minutes longer to walk. I wasn't trying to walk fast. I just walked. Actually, I feel better. The walks HAVE to be a part of my days for awhile.

I thought about this or that. I wondered who first thought of ghosts. How did the myth of ghosts get started? or mummys, or zombies. Who started turning death into something ugly? I wanted to feel Mom close. I didn't today. I have though and I'm sure I will again. I will welcome the sense of her. I hung the windchime I bought for her while she was in the nursing home in front of my office window. I get pleasure making it chime as I walk by. I smile as I listen to the tinkling and watch the prisms dance. For now ANY little thing that reminds me of her brings me pleasure. The other stuff I just shut it down.

Monday, May 23, 2011

Ashes Being Delivered to my House Tomorrow

I got the call as I was going back to work from lunch. It threw me for a loop. I started making mistakes, I couldn't concentrate. I finally told my boss it might be better if I quit for the day. Man, I sure can't do that very often. Again I held it together while at work but with a huge price. I am SO tired. It takes a lot out of me to go on as though nothing is wrong.

The Saturday before Mom died, Myron went in with me to see Mom. He didn't go very often. We were mostly checking to see if the hospice kept their word about replacing her mattress. He got close to her face and joked with her. As weak as she was she still responded to his teasing. Her sence of humor carried her right up to the end. She loved Myron and she joked with him all the time. Just one more reason to love him.

Sunday, May 22, 2011

One week

The telephone was our way to stay connected. Before unlimited long distance we struggled with high phone bills.

When I was taking treatments for cancer, I would hurry home to call Mom. I never told her how rotten I really felt. Just hearing her voice made me feel better. We talked about the birds I saw that day at my feeder, how my cat imagined himself a great hunter and how the barn swallows dive bombed him. We cried together when he went out to hunt and never came back. We excitedly planned my visit between chemotherapy and radiation. That was the most foolish trip I ever took. I wasn't strong enough to travel but I wanted my mom. I literally spent a week with her in assisted care.

I wish I could call her now. I know many, many people survive loosing a parent. I also know that someday I will enjoy my days again. For now I just go through my day, I smile when I am suppose to. I reply appropriately. But inside I am SCREAMING! I feel like there is a big mark between my eyes that says "mourning". It takes me awhile to realize that most people are completely unaware of my sadness.

I told Myron I didn't remember how long I felt sad after the babies died. He said a long, long time. This sadness hurts more. Maybe because I didn't actually know the babies. I have a lifetime of memories with Mom. I think too since she is my ONLY parent I am more sad.

I talked to a friend of mine. She lost her husband a little over a year ago. She says the grief ambushes you. She says in someways she did better the first year then she is doing now. I know she struggles. She is still very angry at God for not healing. I prayed for healing but I accepted very early on that wasn't going to happen for Mom. I did ask for more time. I feel so cheated. So maybe I am angry at God. Another friend once told me that God is big eough to handle our anger. But, I'm not really REALLY angry. I am SAD.
- Linda Shumaker uses BlogPress from my iPhone

Friday, May 20, 2011

I Still Find Life as Usual Hard to Take

I took more money to the funeral home today. I'm not sure where I stand with them. Sunday they Said I needed $735 besides the $600 death benefit Mom was entitled to. The receptionist said the Director would call me. It feels like they are holding Mom's ashes for ransom. I'm not in a hurry I am actually dreading it.

We went to a store and looked at "reunification" plagues. Kathy bought one. I wanted an urn that could go in my garden. I found one online. Funds are low this month but June will be here soon. I also bought a performance cd. Mom loved my flute. She was so proud. So I am going to play my flute for her memorial. I'm glad it doesn't have to be right now.

Today has been hard but I feel I have made good progress.


- Linda Shumaker uses BlogPress from my iPhone

Wednesday, May 18, 2011

Why isn't the world stopping?

The world stopped when Bin Ladden died. Why is it life as usual now. My mother was a quiet gentle woman. I don't want my life to keep going like nothing happened.

Myron said he found comfort in business as usual. I'm not. Maybe I went back to work too soon. Yesterday was a good day. I worked hard and I went home tired. Today my day will be longer-- work until 4 no later then 5 then class from 6 til 9. At least my car is starting like it is suppose to. But, I would usually look forward to class. Today I'm not. At least it is review for me.

I missed a stress test last Monday. I rescheduled it for June 1, 2011. Might be a problem. One of my employers is having surgery that day. We'll see. It's Wednesday, I have clas in the evening. After a stress test in the morning I am going to need some time off to rest.


- Linda Shumaker uses BlogPress from my iPhone

Tuesday, May 17, 2011

I'm going back to work today

It may be soon and I have two months of housework to catch up on, but for today I need to be with people and I need to be busy. I need to take my mind off the fact that my mother is being reduced to a container of ash. I want to be able to think about letters that need to be written and phones that need to be answered--"Bartlett Counseling Services. This is Linda. May I help you?"

Kathy (my daughter) helped me bring all of Mom's things home. They are sitting in the living room because I can't deal with them yet. Myron is complaining about having to walk around them. But if I get rid of them, she will be more gone. Right now I look at the sack of clothes and I think "those are Mom's clothes. I'm sitting in "Mom's rocker". I just don't want her to be completely gone.


- Linda Shumaker uses BlogPress from my iPhone

Monday, May 16, 2011

What do I write now?

There is still a lot to be taken care of. I still haven't talked to Carl (my brother). He was suppose to call yesterday and didn't. Financial arrangements have to be discussed. Her things have to be cleared out of her room. I don't think I'll go to work today. Myron will, but that's OK. I need some time alone.

I can't believe I won't ever see her again. It's hard to imagine my life without her in it. My sorrow is for me only. I don't wish her back.

It took me awhile to find a funeral home to take her body. She had no money, no insurance. Most funeral homes want their money up front. Criticisms were voiced(not to me of course) about how disrespectful it was to leave her there for so long. But since she was being cremated as long as I didn't make a decision , I had her to go back to. I didn't and I finally made a choice. With the choice came the realization I would never see her again. And that my mother was being reduced to a carton of ashes. I had no idea how that would make me feel. It hurts -- it all hurts.


- Linda Shumaker uses BlogPress from my iPhone

Sunday, May 15, 2011

It's Over

Mom died this morning. I am numb.


- Linda Shumaker uses BlogPress from my iPhone

Thursday, May 12, 2011

Lilacs




The DON brought Mom a little sprig of lilac. Mom didn't open her eyes but it is obvious that she enjoyed them


Linda Shumaker uses BlogPress from my iPhone

Tuesday, May 10, 2011

Today I am at peace

So what-- this is about Mom -not me, right? But where I am now is unavoidable and part of Mom's dying process. So much of what she was is already gone. She doesn't voice wants or dislikes anymore. She just lays there --waiting. I watch over her, searching for little things, ways to make her waiting easier -- a lip balm with a flavor in it, music (however, staff keeps turning it off). She still enjoys being read to. I have several books at her bedside she enjoys. She stll enjoys teasing. It amazes me how enduring her sense of humor is. I watch for any little sign that she is in pain. But she appears to be comfortable. She receives a low dose narcotic patch that can be increased if she needs it.
I wish I could put everything on hold and just concentrate on her. My life keeps interfering. But I have to work, floors still need vacuuming, clothes and dishes still need to be washed. Grandchildren still need loving. I give her as much of my time as I can - more then I should. I would put everything on hold if I could. I pay bills late (some not at all). I know I am making more trouble for myself down the line but I just don't care. As much as possible my world has stopped.

- Linda Shumaker uses BlogPress from my iPhone

Location:Park Ave,Covington,United States

Monday, May 9, 2011

The end will come soon now

Today Mom's IV infiltrated after only three days. The nurse on duty wanted me to authorize a midline. I refused. Mom has had enough. So she is now getting nothing by mouth and no IV. Dr said it would be my decision. It is by far the hardest decision I ever had to make. But now that I have all I want is to be with her when the end comes.


- Linda Shumaker uses BlogPress from my iPhone

Saturday, May 7, 2011

Beautiful Friday

Took Mom out last Friday. It was a spur of the moment thing. The weather was perfect. We went to a protected part of the yard. Kathy read to her.


Mom was alert the whole time, about a half hour.



Hugs






Sitting in her room waiting to be put back to bed.

Took Mom outside again yesterday. She didn't enjoy it as much. The Dr talked to me again. He was very kind but what he has to say is so hard.
Basically, Mom is dying. Her body us shutting down. The IV gives her just enough nutrition to keep her kidneys from shutting down. She is on comfort care. He explained that she can exist like she is for a very long time. He said it was up to me when to discontinue the IV. Why does it feel like he is asking me to kill my mother?

- Linda Shumaker uses BlogPress from my iPhone