Alzheimer's has taken my mom!

Anger

2011-10-01T20:30:00.000-07:00

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

2011-10-01T20:29:00.000-07:00

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!!!!

2011-09-29T19:14:00.000-07:00

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!

2011-08-25T21:54:00.000-07:00

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

2011-07-22T22:03:00.000-07:00

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!

2011-07-18T21:22:00.000-07:00

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

2011-07-10T21:12:00.000-07:00

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!

2011-04-23T21:36:00.001-07:00

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

The weigh in!

2011-04-22T20:14:00.000-07:00

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!

2011-03-07T19:55:00.000-08:00

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

2011-03-03T21:49:00.000-08:00

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!

2011-02-10T19:52:00.000-08:00

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

2011-01-28T12:42:00.000-08:00

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

2011-01-27T12:34:00.000-08:00

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

2011-01-26T12:15:00.000-08:00

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!

2011-01-17T12:03:00.000-08:00

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

2011-01-16T10:57:00.000-08:00

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!

Merry Christmas!

2010-12-26T22:02:00.000-08:00

Visited mom on Christmas. David got a guitar for xmas so he wanted to sing songs for her. She is still not able to gain weight and walking is more difficult, but she is more responsive to us and music. She has even been more vocal! She even said David's name yesterday. We will take anything.

It has been a hard couple of days! I miss you daily, but the holiday season is the worst! Why you, why now! I know God has a plan, but I just don't understand! You are getting robbed of your life, your kids and grandkids! And we are getting robbed as well! We love you and pray for you everyday!

Merry Christmas!

2010-09-30T06:33:00.001-07:00

People are always asking how you are doing. Well let's give an update. You are having troubles gaining and retaining your weight so they have switched your synthroid med to be given every other day. You are only eating thickened liquids so you don't choke when you try and swallow. Drinking seems to be the best way to get any nutrition in you. You are having trouble walking, so PT is working with you to help regain your strength, but they are having to carry you quite a bit to move you. You have a great second family at Garden Terrace. They have taken great care of you and I'm blessed to have found such a great place for you!

If I knew...

2010-07-13T21:32:00.000-07:00

Mom and Me

David(18 mo.)and Oma

I found these pictures the other day that are about 3 yrs old. This was when I thought my mom was really getting "bad"! I only wish I knew then what I know now. She may not have had a great memory and asked the same thing a million times, but she still knew us and could as least talk w/ us!

Happy Birthday Oma!

2010-07-11T11:28:00.000-07:00

Happy 63rd Birthday Mom!

David and I went to see mom on her birthday. We decorated her room with balloons, art work that the boys made for her and cards w/ pics from Will! She was sitting in her chair in her room when we came to visit. She didn't make any eye contact with us, she just sat in her chair grinding her teeth. We sat and chatted w/ her and David told her about his b-day party. Before we left David wanted to pray for her to get better and then he put his "healing hands" on hers. She took his hand and wouldn't let go! It was a special moment.
We miss you mom and wish that things were different! Love you!

Easter egg hunt

2010-04-03T20:42:00.000-07:00

Mom's place had an Easter egg hunt for the kids. The kids dyed Easter eggs and had craft time. Then the Easter hunt began. Jake just kind of wonder around, not really knowing what he was suppose to do, but David was oh so excited!

WHY!!!!!!

2010-02-11T23:13:00.000-08:00

Mom,
I miss you more than you know! I know that I haven't seen you in a while but I miss you. I miss the fact that you don't know your grandchildren. I miss that I can't come over and bring all the kids to your house and chat,spend the night if I want! I want to hear your voice over the phone, in person. I miss YOU!!!! WHY!!!! Why you, why me! 8 yrs I mean that's a lifetime of life! I need you more than ever! Why aren't you here! It's not fair! Life I know isn't fair, but this? Really, why couldn't you have gotten Alzheimer's when you were 80 not 50! All I can say is why!

Love you Mom!

Merry Christmas!

2010-01-09T20:15:00.000-08:00

We celebrated Christmas at my mom's place. We brought gifts from her for the kids to open. My Aunt and cousin joined us in celebrating! The kids did pretty well, but the weather wasn't cooperating! It started to ice and snow while we were there. It didn't make for a good ride home!
Mom, I hope you had a wonderful Christmas, surrounded by the ones you love!

Christmas party!

2009-12-20T21:07:00.001-08:00

Mom's facility had a Christmas party. I took David and Patrick with me. Jake and daddy stayed home to nap. Mom's hall was decorated with red and white balloons, which caught David's eye (we went home with 4!). Appetizers were served with punch, while Christmas carols place in the background. Mom drank an entire glass of egg nog which is good for her. The staff was glad to find something she likes to drink. Nowadays it's hit and miss with things she will eat. Marsha came and gave the boys gift for xmas. David got and advent calender and Jake got a car. Mom was pretty quiet and would cry off and on. I always wonder what she is thinking while she cries. Mom was dress nicely with her hair braided. I am thankful that she has staff members that take good care of her while I am not able to.

Trick or Treat!

2009-11-07T21:35:00.000-08:00

2009-10-04T20:52:00.000-07:00

Saturday we walked a mile in the Alzheimer's memory walk, raising $205 for your cause! I took all three boys to the walk. We enjoyed free food and fun games and activities! David and Jake got their face painted, while David played a bean bag game. We had a great time, despite the fact that it was a bit on the chilly side!

The newest Grand baby!

2009-09-08T19:33:00.001-07:00

Happy Birthday Mom!

2009-06-24T11:16:00.000-07:00

Happy 62nd Birthday to a wonderful Mother and Grandma! I so glad that God has blessed me with a mother like you!

2009-06-17T14:15:00.000-07:00

I went to see mom and they cut and dyed her hair. Her Hair was getting so long and gray that I wanted it to be cut and colored. Well, the cut came out great but the color is a little too dark. It really washes out her pale face! I told the lady that I wanted it to be a light brown color, lighter than mine. Not darker than mine! Hopefully it will wash out and lighten up a bit!
My aunt had brought out her old wedding album from her first marriage. I pointed out people, mainly of her and her ex-hubby and asked if she knew them. She would look at the pictures and nod yes. She even helped turn the pages! We just sat in her chair together and had a nice time! She is real quiet and doesn't say much but I don't think she's getting worse!

2009-05-19T17:49:00.000-07:00

David and I went to visit mom today! We went outside and sat in the garden and enjoyed the beautiful day! We sat in the gazebo while I painted mom's nails. They don't look the best because she kept moving her hand and the nail polish was clumping on her nails. We walked around the garden for a while, but mom took lots of breaks. She really focused on David, but who wouldn't, he's an active boy!! Mom was good today. She didn't say much but seemed really relaxed once we were outside. It's been awhile probably since she's been outside and a little fresh warm air always does good.

Happy Mother's Day!

2009-05-11T03:10:00.000-07:00

I found this poem and wanted to share it!

When You Thought I Wasn't Looking

When you thought I wasn't looking,
I saw you hang my first picture on the refrigerator,
and I wanted to paint another one.

When you thought I wasn't looking,
I saw you feed a stray cat, and I thought
it was good to be kind to animals.

When you thought I wasn't looking,
I saw you make my favorite cake for me,
and I knew that little things are special things.

When you thought I wasn't looking,
I heard you say a prayer,
and I believed there was a God that I
could always talk to.

When you thought I wasn't looking,
I felt you kiss me good night,
and I felt loved.

When you thought I wasn't looking,
I saw tears come from your eyes and I learned
that sometimes things hurt,
but it's all right to cry.

When you thought I wasn't looking,
I saw that you cared and I wanted to be
everything that I could be.

When you thought I wasn't looking,
I looked....and now I want to say thanks
for all the things I saw,
when you thought I wasn't looking.

Mom,
I hope you had a wonderful Mother's Day! Though we can't see or hear your thoughts I hope you still remember us when we visit and remember the good times we had. The long chats and the shoppng sprees! I love you and miss you with all my heart!!!

Alive inside!

2009-03-01T19:41:00.001-08:00

Yesterday while my brother was in town we went to visit mom. We sat and chatted with her reminiscing about the old days! As we were chatting, mom mumbled and she sounded like Charlie Brown's teacher on peanuts. I mimicked her and she laughed. She mimicked me and we all laughed. We continued this for a few minutes laughing and having a great time. It was truly a great moment that Brian and I shared with her. It's good to see that a little part of her old self was still live! I will treasure little moments like these!

2009-02-17T09:07:00.000-08:00

Mom, Me and Patrick!

Oma And Her Boys!

We went and visited mom on Valetines Day! We took the staff some cupcakes that David helped me make! Mom was really good! She made a lot of eye contact and would say a few words. At time she would look at us with her mouth open and her eyes wide like she knew us. She really acted like she knew Justin! She would babble something that was hard to understand. Maybe she was trying to say our names? I brought he into the tv room so the boys could play and keep them contained. She looked over at us and started to cry, then she said, " you don't love me, you don't want me." This saddened me! I told her how much we love and miss her and that we wish she would come home to us. I hope she truely knows how much we love and care for her! As we were leaving I took her back to the dinner area and she call out for my Aunt Marsha. It is neat that she still remembers her! My aunt probably will be the last person she remembers! My mom has known me for 30 years, but 61 years is a long time to be with someone! I sat her in a chair and bend down to make eye contact with her. With her eye widened again she babble what sounded like James and then said you're cute! Even thought my mom doesn't know who I am it's still good to hear this from her!
Mom I love you so much! I wish could wave a magic wand to make this horrible disease disappear! We think about you everyday!

Christmas with Mom

2009-01-28T09:26:00.000-08:00

Christmas Eve we meet Brian and Julie at mom's place to visit and open gifts. Mom was really good. She sat in the recliner and was pretty quiet. She would respond to the little one as the explored her room while the adults caught up with each other. I'm glad that we all got together, but it was really different without her there at the house for Christmas. Again I felt guilt stricken! I am glad that we do have her around to be able to have Christmas with!

2008-12-20T09:29:00.000-08:00

Mom,
Today while I was taking my nap, I had a dream about you. You weren't as sick as you are now. You bought gifts for the boys and where playing with them. I woke up crying cause you will never have this opportunity!
I get so mad that you aren't here to be there for the boys and me. Everyone else has such strong family support but you where my support. At times I feel so alone. In times of need I thought my family would pull through for me and Justin and be more supportive, but maybe I'm being selfish. I feel as though everyone just turns there back and says it's not my problem or I'm sure everything is fine. But it's not fine! They ask how you are, but I think they ask just to be nice. I am lucky to have friends that have been their for me! I never thought that I had to rely more on my friends than my family! It's really sad. I know how disappointed you would be.
Let me just say It's Not Fair! I ask God daily why you, why me! I wish thing were different and I hope my kids never have to go through this. At least there will be three of them and hopefully can support each other through something like this.
Miss you and love you lots!

2008-12-14T20:28:00.000-08:00

Mom's place had a Christmas party. Me, Justin and the boys went and my aunt Marsha and grandmother Dot came to enjoy Christmas carols and some yummy appetizers. Mom did really well. She sat and stayed with us at the table. A few crying spells here and there, but once Dot and Marsha showed up she could stop crying. She keep saying "my family, my family!" I think she realized we were all here to be with her. It's never easy to see her cry. I can't help but try and hold my tears back. When it was time to go we all said our goodbyes with many hugs and kisses. She started to walk to the door and said "let's go kids!" Justin hugged her and she said, "goodbye Brian" It was cute, but equally sad. It's hard really understand what she is going through and what she knows, but I have to think she has more going on in her brain then she can tells us.

2008-12-11T15:07:00.000-08:00

Make a Smilebox photobook

2008-12-11T13:20:00.001-08:00

I took the boys to see Santa yesterday. I was surprised how well they did. No crying of any sort!

Happy Thanksgiving!

2008-11-27T20:32:00.000-08:00

We went and visited mom today after dinner since she couldn't come to visit. Most people with Alzheimer's don't do well outside of their normal environment. It can cause more confusion and they need consistency at this stage of progression. She looks good and she was up walking around when we got there. We took her to the tv room and I put on some Christmas carols to listen to while we visited. She would smile at us once she caught our eye and we could see a glimpse of her. I'm not sure that she recognizes me anymore, but she sure acted like she knows Justin. It's all in the way she looks at us. Here are some pics that I took while we were there. My camera was acting up and not snapping as quick as I wanted it to. Mom was kissing David, but by the time the camera went off the moment was gone. I need a new camera!

Mom-
Today was really hard for me. This was the first holiday without you. It almost felt like just other day. I feel so guilty that we had Thanksgiving without you! Jake was really attached to you and trying to flirt! David never wants to leave and gets upset when it's time to go. I hope you know how much you are truly loved and missed!

Happy Thanksgiving!
Hope you enjoyed your Sweet Potatoes!

2008-11-06T22:08:00.000-08:00

Mom,
I miss our late night talks! This week was the presidential election. You missed out on the MSNBC coverage, though you would have not been happy with their views and ended up watching Fox! I almost registered you and had Marsha cast your vote! I know you would have wanted to vote for McCain, though he wasn't elected as president. God, I wish I could hear your voice on this election!
Still hoping for a miracle!

2008-10-30T21:29:00.000-07:00

I took the boys to my Mom's Halloween party! David dressed up like Steve on Blues Clues and Jake of course is my lil' punkin'. David had fun going around to each resident and saying "Trick or Treat!" He couldn't believe how much candy he got! Just wait til tomorrow buddy!

2008-10-04T20:11:00.000-07:00

Make a Smilebox photobook

Today was the Memory Walk for Alzheimer's Disease. We raised $540 exceeding our goal of $200! By the time we got into registration, they ran out of shirts! With the money we raised, the family was allowed 5 free shirts that the association will order for us. Justin, David, Jake and I walked the mile in Corporate Woods, opting not to walk the 5k due to the children.

Jake needed a little caffeine to get him started! The turn-out was amazing including people young and old. People are so determined to end this horrible disease that there were participants even using walkers. Nothing was going to stop them from supporting their loved one afflicted with Alzheimer's. There was an older man, probably in his 70's, wearing a sign that read "walking in memory of my loving wife" walking by himself. It saddened me to think that she was possibly his only family! I am grateful for all of our friends and family who have supported us through this difficult time.

Mom,
I thought about you as we were walking today in your name. There are so many people affected by this disease, though selfishly I wanted to know, why you! I am honored to have you as a mother and glad that I can due this for you! You wouldn't believe how many people there are supporting you. We love you and miss you!

Brooke

2008-10-03T17:46:00.000-07:00

I was sitting at the table figuring out the donations I had received for the Alzheimer's Memory walk for tomorrow. David wanted to help me and draw a picture for Oma (grandma). As we are sitting there he says to me.

David: Mom, is Oma happy or sad?

Me: I don't know baby, what do you think?

David: I think she is sad!

Me: Why baby?

David: She is lost! She lost her house!

It made me tear up!

2008-09-22T23:56:00.000-07:00

Today went well. It saddens me to see you cry when we visit, but I know that you are more aware of us then we think. I know that you miss us just as much as we miss you! I love you very much! And even though you can't always express it I know that you love us as well! David wants you to play with him all the time when we visit! Thank God he doesn't realize, though it is hard to explain why you can't "play" puzzles with him! I am amazed how well David has taken to you even in this "sick" state! He doesn't even act like you are any different from before, which I love! God has blessed me with incredible children. I can see David in a health profession!
Mom, I'm glad that you where such a big part of my life. I truly miss your smile and good nature! Love you Lots!

2008-09-18T21:35:00.001-07:00

Mom I miss you a lot! I want you to know! I don't know how my life has even continued without you in it. I had a dream last night. It was so real that I thought you were "real!" I want you to know that I miss you with every breath and every heart beat! Though you still breath, I know your mind and Spiritual soul, it's not you! I Miss you, I miss your heart and Soul!

2008-09-18T19:54:00.000-07:00

These are some pictures of my mom and my son David. These were taken a year ago right before she turned 60! She stayed the weekend with us and David and her were inseparable!