Anger

I think I am losing perspective of who I am. I am this mean, frustrated, doesn't care, person. I am totally lost..... Sitting here just pissed off at everyone! I feel alone with no one who cares to listen! I almost feel as though I don't really exist. I think people turn there cheek or avoid me cuz they don't know what to say to me. The time in my life that I need someone to care is now... where are you! You say you are my friend, well be a friend! Call me, ask me how I am doing! Take me out, get me out! I need you! Even if that means that I will cry when you ask.. so what! Isn't that why we have friends? To be the shoulder to cry on! I guess I am suppose to put on my game face, suck it up. I guess you weren't there while she was sick, why would I think you would be here now! I am realizing that I don't have very good friends!

To my brother,
Be ashamed! You were never here for her, or me! You had a choice and you chose to be selfish! She was sick for all those years and you rarely saw her! I was the one her found places for her to live! I handled her medical bills! I took her to the hospital, waiting there for 5hrs while having a 2 YO with me. I was there when placing her in a pych. ward as she turns to me and tells me not to leave her! I did! Not you, me! I have to live with the guilt of leaving her! I was the one who planned her funeral. You got to waltz in the night before funeral to be present. I was there! Where were you?

-Anger

ALZ walk 2011

This year for the ALZ walk, they handed out flowers. Yellow stood for those that knew someone with ALZ, Purple for those who had lost someone with ALZ and Blue for those walkers with ALZ. It was beautiful day but a very difficult! The walk was different then passed years. This year I had to walk "in memory" of mom instead of "in honor" of her!

It Hurts!!!!

I cried when you passed away. I cry today still. Although I loved you dearly I couldn't make you stay. A golden heart stopped beating, hard working hands to rest. God broke my heart to prove to me he only takes the best.

I miss you soon much it hurt. My heart is breaking inside and I don't know how to fix it. I just want to run away and hide, disappear for this world. I hate this feeling of loss! I have been grieving for so long now that I thought once you passed that I would be fine, but I'm not! It just hurts!

To those that need someone to talk to!

I first started this blog to keep a log of mom and her final days of life. I have since come across people that have shared the same experiences I have. I encourage any of you that are going through something to comment and keep in touch. I wish I had more of a support group while going through this. I am lucky to have found a co-worker who has a parent going through this and share experiences and to vent. Thanks Ash!

Funeral

Mom was laid to rest today! She had a beautiful service at Porter Funeral home surrounded by old friends and family. We laid her to rest in the Shawnee memory gardens, next to her mother and father. A perfect place for her to be!
Mom you will be dearly miss by so many, especially by me! Love you!

My Angel!

Today at 2:15pm God wrapped his arms around mom and took her with him to heaven!
The day started well. Mom ate well for breakfast and lunch. Her hospice nurse was there to help her eat lunch and give her a shower. Megan her hospice nurse let mom know that today would be the last day that hospice would be visiting. As the staff was putting mom back to bed, mom collapsed. The hospice nurse was in the parking lot, ready to leave when she got the call. Just like that she is gone! No warning, nothing. I can't believe it! It's not real!
I will never be able to touch you, hold your hand or kiss you again!

Mom's status

Mom has been doing very well. She has gained weight and maintaining at 89lbs. So well in fact that hospice is no longer going to see her as of the 20th! Hospice will come back to care for her if her status changes. I can't say enough good things about the care she has received with hospice, after I got the right nurse for mom of course! It truly takes a special person to be a hospice nurse!

Easter Egg Hunter!

Went to mom's to go Easter egg hunting. The boys had a great time!!!

The weigh in!

Hospice continues to check in on mom twice a week. I asked if they would start weighing mom again once a week, since they have stopped. The first week of April mom weighed 86lbs. Last week she weighed 82lbs and this week she is down to 81lbs, yikes! Thursday she wouldn't eat and would only take a few sips of water. The staff said that she wouldn't make it probably past 3 months after her seizures started, but I thought she was going to prove them wrong. Now I am having doubt! Not ready for this. I don't think I ever will be!

Went to see mom today! She was sitting in the dining room, just finishing up breakfast. She continues to eat about 25% of her meals and taking in her ice cream and med pass drink. As she sat at the table she was looking down. We came in and hugged her. She flinched a bit and didn't really respond to us. She felt cool, so I grabbed her a sweater. We walked her back to her room and sat her in her recliner and placed her oxygen on per nasal cannula. My 5 year old, David immediately sat next to her on the ground and grabbed her hand. I think he was trying to comfort her in case she was scared wearing this oxygen. David has had to have breathing treatments and the large oxygen tank in the form of a small robot buzzing away, must have reminded him of his nebulizer. It does sound just like it. David sat there,not wanting to let go of her, telling her stories about his new kindergarten that we just visited, in which he will start next year. Within 5min. mom perked up and was more responsive. I think the oxygen has really helped her mental state, for what is left!
We did get a new hospice nurse that started today. So far it seems like it will be a good fit!!

Mom's cont. update

Mom is eating about 25% of her meals. She has not had another seizure and her vital signs remain stable except her oxygen saturation(O2 sats). Her O2 sats fell at 81% so oxygen was started. She is a fighter and cont. to hang on! I did get a new nurse from hospice. The one that was taking care of mom wasn't very compassionate or empathetic to me. Being a nurse I expect the nurse taking care of my mom and family to treat us the same as I would treat my patients and their family. If you don't have the compassion as a nurse, especially as a hospice nurse, then this isn't the job for you!

update!

In the last two weeks mom has done very well! She is starting to take bites of her food and she GAINED WEIGHT! A whooping 89lbs! So far she has not had another seizure. I just wait by the phone, waiting for the phone to ring.

Hospice care

I decided to have hospice come in and care for her. I met with them today and signed paperwork. Hospice will come in twice a week to assess mom and then report to me how she is doing. I feel better that I will be updated on her status even when there is no change.
I visited with mom while I was there and when I asked how she was doing, mom replied "how are you". The nurse states that she responded the the same way to her this morning. And when I was leaving I told her I love you and she responded with "I love you" back! A divine intervention! For breakfast and lunch mom only took in her supplements. The hospice nurse reported to me that for lunch mom would turn her head when the staff tried to feed her. I guess when the body is preparing for death it stops eating.

Seizure #2

Mom had another seizure today at 8am, lasting about 45 seconds. Her color was gray again and her O2 sats were 83%. They put oxygen on her and her sats became stable. When I got to her place, she was sleeping and her color was nice and pink, but her temp., was a little cool. She opened her eyes when I talked to her, which made me feel like she knew I was there! She slept for the next two hours that we were there. For lunch they got her up, but she only took her supplements. Dinner was the same. She weighs 97lbs, so she's gained a pound. I feel like her time is ticking!

Funeral home and cemetery

Today my step-mom and I went funeral home shopping. We looked at two funeral homes that are most cost effective in town. Mom is on medicaid and has no money saved or any life insurance policy, so the money is coming out of me and my brother's pockets. The lowest price we have found for a funeral is around $9,000. We just don't have that kind of money laying around, wish we did! I guess we thought that we would have more time to save for this kind of thing. I just didn't expect her condition to turn so quickly! The cheapest way to go is cremation. I know that mom wouldn't want that and my brother and I don't want that. I feel comfort in a place to go and sit and visit. I feel like cremation,in my eyes is like just tossing my mom aside and saying, it too expensive so let's just get rid of you. Having an urn is creepy to me! To each his own!
My brother did purchase a plot at a cemetery right next to my grandparents(her mom and dad). I know that she will love this!

When we visited mom today she was sitting up in her chair. She hadn't eaten her breakfast, but drank her med pass and ate her ice cream. She was pretty alert and responded with a noise when I spoke to her and kept good eye contact with me as I spoke. The nurse reported that when she said hello this morning that mom said "Hi" back in response. Since the seizure it's like she is more aware and is communicating more with words. She hasn't done this in probably a year.
My Brother and I have been calling around for a funeral home and looking into a plot for her when the time comes. The nursing staff believes that she may only have about a few more months to live. We want to be as prepared as possible for when that time comes.

Seizure

Mom had a Grand Mal seizure this morning that lasted 45 seconds. She was gray in color and her breathing was 10 breaths per minute. Justin and I arrived an hour after her seizure and she was sleeping, but her color was nice and pink and warm. Her breathing was 14 breaths she seemed relaxed. I sat on the bed with her and as I spoke she opened her eyes. She stared at me for a while like she was aware I was there. She slept on and off the two hours we were there. We spoke to the nurse about her condition. The nurse said that seizure normally are seen in the end stage of the disease. She didn't know if she would have anymore or how often she would have them. Mom weighs 86lbs and not eating meals. She does take in what is called Med pass that is like a boost drink and she will eat a fortified ice cream. Even with this 2,000 calories a day, she continues to lose weight. The nurse was concerned that the seizure would cause her be real sleepy causing her to not eat and then she would keep losing weight. The fear was that she wouldn't make it for a few days. As we were leaving she really woke up and and was more alert. By dinner she sat in a chair for dinner and "drank" her meal. It is looking good, but we will have to take it a day at a time.

Dear Mom,
I'm not ready! I thought I would be ready for this day, but I'm not! I love you dearly and I hate to see you go through this, but I'm not ready to say goodbye!