Decreased Socialization

Preparing...from Hospice...

I found this little statement from Hospice and it helped me understand that mom is just trying to prepare.... "The person may only want to be with a very few or even just one person. This is a sign of preparation for release and affirms from whom the support is most needed in order to make the appropriate transition. If you are not part of this inner circle at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled your task with your loved one, and it is the time for you to say Good-bye. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission."

This little statement helped me realize that my role needs to be to support those found in the inner circle instead of trying to weasel my way into the inner circle. It is nice to have a clearer understanding of what mom needs from me!

I think from my other posts, you have a good idea about how nights have been. Now, we are finding that she is doing that same whining and whimpering all day long too. It is so hard to see her like that. We never see a smile and very rarely see her eyes because she closes them most of the time. Our mom who used to love her garden, flowers, and birds...no longer feels the joy from them or much of anything else. These pictures are of her yard...she planted everything in this yard after she bought the propery from her parent's estate. I try everyday to show her something from her yard...but she just does not seem to care. It is sad...!

Meet my little sister...Shirley!!!

This is my little sister Shirley! She has three sons Tyler, Sam and Cole and a sweet daughter, Rachel. Shirley is an artist...one of the best I have ever seen. She has such amazing talent. She graduated from ECU with a degree in commercial art but has put that on hold to raise her faimily. My memories of Shirley as a little girl was that she was always so cute and she grew up to be a beautiful lady! She has naturally "nongray" hair...what's up with that???! I know I sound obsessed with the gray hair thing...but wouldn't it be nice to look like her without "Sally's Hair Dye #4N!!! Shirley was born in Bogota, Columbia when dad was in the army. She was born quite premature and had to be in an incubator for quite a while. I remember grandma saying that when they got back to the US..she was so little she would have fit in a shoe box.

One of my fondest memories of Shirley's family was when they came to visit us in Colorado. We took them camping and had a great time! Tyler and Zack were into Robin Hood and we made them costumes to wear while we were camping. They were so cute!

Shirley is also quite an antique hunter and when we lived here, she and I would shop all the local bargain places and found some amazing deals on antiques!

Love ya Shirley!

Today...I cried a little...

I am feeling so sad today...I thought if I just sat here and wrote down some of my thoughts...I might be able to make some sense of it all. Why won't mom call me by name? I know alot of people will say..."if you had been here as much as Ann and Larry, she would know you too" I know in my heart that is true, but I know that she and I have had a great relationship. I tried to come here every 6-8 weeks for the past 6 years and we had some wonderful visits. Before that, I feel like I had some great times with her because when we would see each other it would be for a week or more at the time. Whether she was in our home or we were visiting here...we had some great times together. We shopped all over Dallas, she swam in our pool in Florida, camped with us in the Colorado Rockies, drove to Kentucky to see us, stayed with us in a condo on McCall Lake in Idaho...just to name a few. When she was just calling for Miss Annie...I was ok. But now, she has begun to call for Ann and Larry too....and it is really hurting me...I want to hear her call Gail, Gail... so bad! I know that sounds so self centered and I am sorry...but to be here with her 24-7 and not have her know who I am...it is hard. So...pray for me to keep my prioities straight! I don't have time to worry about trivial things...and you know what!?? this is a trivial thing...writing this has helped...and I am going to try to get over it!!!

When I am feeling overwhelmed, I think about the two year missions our boys served. They put their own feelings and needs aside for two years and just served the needs of those around them. I am sure it was so hard at times...and at times, they wanted to give up...but they kept working....taking one day at the time... I am getting a little taste of that...and I am not going to give up either! As muc as I miss my family out west...I would not want to be anywhere else....so please forgive me for the pity party!!

I stayed up with mom on Thursday night and she did not sleep all night again. I love that time with her. I lay in the bed next to her and she just will not go to sleep...she just calls out all night long...much the same as I shared a few blogs ago. I sing songs to her...which is fun...but the other night she got real loud and said" Give me a big hug!" It was so loud that I thought she was going to fuss me out...until I heard the word hug! I jumped out of bed...and we just hugged! It was worth a sleepless night just for that!

Mom slept through the night...

Last night mom slept throught the night. It was my night to be with her so I feel completely blessed. They say the Lord will not give you more than you can handle...I believe it!!! The only problem was, I had to keep going in her room to check on her because I was so afraid she was not breathing! At one point, I was afraid she was in a coma because I could see her breathing, but I could not get her to respond to me. I know now that she was just catching up on some needed sleep.

Tonight, Susie is here. She comes on Monday, Wednesday, and Friday to stay nights with mom. I can hear mom in there with her and I know neither of them will get much sleep tonight. Mom is very restless. Susie is sitting in a chair in the hall trying to give mom a chance to settle down but it does not seem to be working. Mom keeps whimpering and calling out. She will do that all night long most likely. It make me so sad to sit here and listen to it. I glad for Susie...there is no way I could do this every night. Above is a picture of Susie when she came to visit mom at the hospital.

My cousins Faye and Marilyn came by today. It was so good to see them. Faye brought some chicken salad, piminto cheese, chicken and dumplings, and sausage and cheese biscuits. Yum!

A couple of nights ago, Marla and Peanut brought lasagna, salad, bread and a blueberry dessert. We ate on that for quite awhile. We loved it all...for several days!!

Last week, Joyce Ann Peoples, Vicky, and Susan brought over a fried chicken dinner complete with corn pudding and corn bread! Susan also brought some of her famous cheese straws and we enjoyed them all week.

Today, I called my aunt Peggy and asked her if she could come sit with mom so that I could sneak away and go to Curves to workout. She was so sweet and came right away. It was amazing how that 45 minute break made me feel so much better! She said that I could call her anytime...and the wonderful thing is that I know she means it from the bottom of her heart!!!

Thank you all for all you do and for all your prayers!

Coming Soon...

I feel bad because I am too tired to write about my other two siblings, Larry and Shirley. I love them dearly and I plan to do that soon...but for now...I've gotta go to bed! Love yall!

Meet My Younger Brother Steve!

This is my younger brother Steve. He and his wife Linda came by to see mom a couple of weeks ago. I felt bad because mom was having an exceptionally bad day and they only had an hour or so to visit. They drove down from their home in Maryland. Steve had a major leg surgery a few months back and has not been able to get around. He still has what looks like an erector set built up around his leg. I have never seen anything like it. I was so happy to see him. The last time I think I saw him was at Kira's wedding. Barry, Zack and I were able to visit Steve and Linda a few years ago and it was such a fun time. Steve was six years old when our dad died. It breaks my heart to think of the pain that little boy must have been feeling and I think we were all dealing with the loss in our own way and really not aware of how it was affecting anyone else in the family. He is such a loving and compassionate guy who loves his sweet family so much! When he walked into mom's room and said,"Mom, it is Stevie"...I nearly lost it. That is what mom called her youngest baby boy... I love you Steve!!!

Finally a good night's sleep for mom...

Today is Friday and mom got a good night's sleep last night. The sad thing is, it is the first good night's sleep she had since last Saturday! That is five days of very little sleep and absolutely no REM sleep! I am only up with her every other night so I can catch up on my sleep, but I cannot imagine what she is going through! Everyone asks if she has her days and nights mixed up, but that is not the case because she is really not sleeping soundly during the day either. She slept for about 3 hours yesterday and we were so excited to see her some rest.

We are trying a new medication today to take the place of the Ativan and the sleeping pill. I guess the nurse talked with the hospice pharmacist and this is the med she recommended. We shall see....

Barry and I cleaned up our bikes today and went for a ride up the road. It about killed me..I am so out of shape!

Annie cooked some collard greens today...she had picked them last night...they are so good! Southern Food....ya gotta love it!

Above is a picture of mom getting her hair shampooed by Tiffany. I found the shampoo contraption on the internet and it works great! Tiffany is the CNA that comes in every day to bathe mom. She bathes mom in bed...then Annie lotions her down, put Oil of Olay on her face and vitamin E on all her Cumiden bruises. It is a daily spa treatment!

The other picture above shows Ann the day she wore two watches all day long and didn't even know it until she came her that night! We got a good laugh out of it...kind of an indicator of how preoccupied she has been lately huh! She works every morning at her church preschool and comes here every evening by 4:00 at the latest to help me get mom to bed. Thanks Ann!

Sleeping Pill plus Adivan...but still no rest for mom...

At 7:00 this morning, mom finally fell asleep. I gave her the highest dose of Ativan (for anxiety)every 4 hours last night and a prescription sleeping pill...and she still stayed up all night! I have been laying in bed thinking about this whole situation and decided to get up write down my thoughts...so even if this post seems scattered and useless to you....just remember as you read it...this one is for me! (and I am writing this after 0 hours of sleep!) We started Ativan several weeks ago. The prescription says"use as needed". I have talked with the nurses about how to use it and they have said that when I see she is getting anxious just give her a pill. At first we were only giving it to her at night but as she began to cry more, we began giving it during the day. I talked with mom's nurse Tammy yesterday and I told her that it is hard to get her to take it sometimes (pills are getting hard for mom to swallow). Tammy gave me the best advice yet...she said to crush it and put just a small drop of maple syrup on the powder..put on some gloves and dip my finger in the syrup and let her lick it off my finger. She said that when I notice mom getting anxious just mix some up and give it to her. It works faster if you can get it in that way and she enjoys the experience instead of getting anxious about swallowing another pill. According to a book called,"The Alzheimers Action Plan" Ativan is a number one choice sedative for older people because it has a short half life, meaning that it doesn't linger in the body after the person stops taking it. Some of these anxiety pills need to be taken around the clock to stay effective but this one is sort of "on call" when you need it. I heard someone say that their dad took it around the clock and it lost it's effectiveness...that could be a nighmare! My struggle right now is that I am not sure it is working. Even though I have given it to her every four hours for several nights...she is still restless. According to the same book I mentioned above, "People with Alzheimer's can go on wakefullness and sleeping binges, such as staying awake non stop for two or three days and then sleeping twenty-four hours." That is the pattern we are seeing. Having written this...I have decided to journal when I give her the pills and how her mood has changed...maybe it is working and I am just so caught up in it that I do not see it.... I am going to talk to the nurses again...but in the meantime...mom is calling...Love yall!!!

A Visit from Our Hospice Nurses....

On Friday March 12, we got a call from our Hospice. They had a meeting with the doctors about mom. Based on what they were told by the nurses who visit 3 days a week, they think that it is time to quit all the invasive medications and blood tests that we have been having mom go through. She has been so agitated and sad lately and the nurses picked up on in in the last couple of weeks. It was hard to make a decision like that. After talking to them for a long time, we decided that they are right. Basically, mom is not going to get better. Her mind is really struggling and our goal needs to be to just make her peaceful and happy. That is hard to do when you are shoving pills down her three times a day, taking her blood sugar twice a day, giving her insulin at least once a day, and inviting nurses in to draw blood at least once a week. So as of Saturday, we have cut her pills down to just a few important ones and we no longer check her blood sugar or do insulin. I have to say, she seems much calmer!

• Today we had a hoist delivered to help lift mom. It is so nice to be able to get mom where she needs to be without having to scare her. As part of the progression of her disease, she quit walking about 2 weeks ago and this past week, she became scared to stand. Her mind just cannot relay a message to her legs. You can imagine how scary that would be! I was showing Ann and Joni how the hoist works and Joni said," Gail you are so excited...you are like a kid in a candy store!!" She is right! It has been so scary to try to get mom around and have her legs just go limp on me! I was so afraid of hurting her. Thanks to the hoist, we can fearlessly go from the bed to the wheelchair to the potty! Oh Happy Day!!!!
  
• We had lots of visitors this weekend! Kira, Rusty, Aunt Shirley, Alma and Dawn came on Saturday. It was a beautiful day so most of us stayed outside and we let a few visitors go back to see mom at a time. She does better visiting with only a couple of people at a time. We got her up later in the afternoon and these are pictures of that visit.
  
• Shirley came on Sunday and helped Larry while Barry and I went to church. We go to the Wake Forest Ward and really enjoy that time. I loved being there although I miss our ward! It is hard to be a temporary visitor and not be able to get to know some of the people you meet...but they are some sweet people! We do know a few people in the ward that we knew when we lived here before and it is so fun to get reacquainted with them! I love the sunday school teacher!! She reminds me of Whoppi Goldberg! She kept us all laughing so hard and still taught an excellent lesson!

48 hours with little sleep....

This is mom's bedroom. We have a hopital bed in it with a twin bed next to it.

Mom has been going through some rough nights. Her mind must be just racing! She can't be settled down. We are giving her Adivan which is supposed to help, but it just does not seem to work. We are trying to adjust dosage and frequency with the help of hospice...but nothing seems to work. We will keep trying. She went 48 hours with nearly no sleep...slept one night...then another 48 with no sleep. Thursday night I was in her room laying on the bed beside her and I held her hand nearly all night..but she still could not go to sleep. At about 1:30...I took out some paper and began to write down the things she was saying. I don't think you can read these and not agree that mom is seeing glimpses of a world that we will all be a part of some day. She wants to go to her eternal home. The other day I asked her if dad (Paul) was at home and she said "yes", then I said,"What about your mom and dad." She said,"They are there too".
Here are the things I wrote down....
1:30 am "Mess up here- its already messed up. Dont say it, Miss Annie I wanna go home- Keep calling me- uh uh" (falls asleep)
1:35 am "Miss Annie- come in here- this is up here, up here, up here" (sleep) "Let me go home, this is my house, please let us go home'
1:40 am "Miss Annie- me go over yonder. I want to go home. Miss Annie, Miss Annie to come over here. Miss Annie, Miss Annie.
ME:Mom, I with you. I love you.
"All of this up in here"
"I dont want to roll over that way."
ME- "you can stay where you are"
"Happy Happy the day before. Can we go back?"
me- "back where?"
"Up there" (sleep)
1:45 Nothing going on in here
ME: How about going to sleep
I have one every time we go to work on the other thing.
ME: What thing?
The other thing. Let me roll over.
I ROLL HER OVER>2:00
"Turn it over here...Turn it over here." (falls asleep)
"Me and Ann are cold in there. Let me go over here. I can't do that. Miss Annie, Miss Annie, Miss Annie"
"Now are we over here. (Points to mirror) Over there. Me, me, me over there. I'm going over here. Miss Annie...teacher."
I roll her over again and she sleeps...snoring a bit...yahoo!!!
She sleeps until morning. I always hate to wake her up for breakfast but if I don't, she is weak and gets off schedule for her pills. I have to get her up by 8:30 and feed her by 9:00 to make sure she does not get too weak.

The beach trip seems so far away!

We had a great trip to the beach. Rusty's Beachhouse is such a wonderful refuge! Ann and I managed to get in some shopping of course and the 4 of us did some sightseeing. We went to Harkers Island and had a great time walking along the beach at Fort Macon . My favorite part was pulling up my pant legs and wading in the ocean. It was sooo cold but felt so good. Water seems to draw me like a magnet! We hunted for shells and found lots of what Ally and I call "Mermaid Glass". Love ya Ann and Larry!!!

Eye infection vs Antibiotic and Antibiotic is winning!!!

This is one of the only pictures of all of us together!


What a difference! Mom took 3 antibiotics yesterday and today her eye looks and feels so much better. I had the picture of her with the infection on my last blog but Barry thought I should take it off so I did. Anyway, we are on the mend finally with that and she seems to be feeling better. It is so sad to see how confusing the world is for her. She did get out of bed today for all three meals but she is having trouble with walking today. She really has to think about putting one foot in front of the other. It is a shouffle kind of a walk. Eating has become very confusing too. We have to make sure she has food in front of her when she sits at the table and she does fine.

Ann and Larry P. and Barry and I are going to the beach tomorrow! (Thanks for the use of the beach house Rusty and Kira!!!) We are excited to get away but I also feel nervous about leaving. It is only 3 hours away so it will be ok. We need to get away.

Today I had my hair cut and colored. I really had the "skunk" style going. A gray streak down the part line. Ann came over and stayed with Annie and mom. I love the way the girl did my hair and it feels so good to feel a little less frumpy!!! I honestly only wear makeup on Sundays for church and have just been quickly running the brush through my hair in the morning. Poor Barry must think he married a slob! Ill try to be better about that.

I love blogging! It has been so good for me to get my feelings out and this is such a fun way to do it. Please know that I am doing fine and though this is hard, I love being here. My sister and I are really enjoying our time with mom. Ann comes nearly everyday and I know it is because she, like myself, is just wanting to cherish every moment that we have with our special mom.
Barry helps me get mom up in the morning and that has been a special time too. My brother, Larry comes every weekend and it has been fun to spend time with him. My sister Shirley came last saturday and sunday and mom enjoyed seeing her and her sweet daughter Rachel. I have a brother Steve who has not been able to come down but he calls and checks on mom. We are really trying to pull together. What if we had not decided to come when we did! It makes me sad to think of all these special times with mom and my siblings that I would have missed!

An Eternal Perspective...

Annie, Ann and I have shed some tears today. Mom is suffering so much from her eye infection and is really out of it. She keeps asking for Annie although Annie is standing right next to her. She keeps asking the same questions over and over. All she wants to do is sleep. The hospice nurse came in today and I sat at the table with her and just started crying. I had held it in all morning and it just came out. I told her that mom slept great all night and but I kept getting up to check on her...and all I could think of was...suppose she is not breathing! The nurse told me that that could very well happen and that I needed to prepare myself for that. She started telling me some signs to look for. I am really not ready. I heard Annie at the door so I went to greet her and she saw me crying and I quickly had to say"Mom is ok...I am just having a weak moment". Then Annie started crying. Ann came by later and she said she has not been able to stop crying...seeing mom so listless and confused is so hard. Are we doing enough? We wish we could fix it for her. I think the hardest thing is when mom gets angry with me. I know it is just because she is uncomfortable and that I shouldn't take it personally, but it hurts. Joni is here almost every night and last night mom did not know who she was. That was painful to see.
Tonight I found this picture of mom and dad. They look so happy! Mom lost some of that spark in her eyes when dad died so very many years ago. I need to keep reminding myself about that incredible reunion they will have someday. For now...we will just keep loving mom and giving all we have to keep her happy! (PS...Marilyn, I have had you and your mom in my thoughts so much today! Love ya!)

Poor Mom! Eye infection and Constipation!

Mom has had a rough few days. It is really strange, but when she was in the hospital, we noticed that she would look at us closing one of her eyes. We thought maybe it was the result of a stroke but that was ruled out. Now, 4 weeks later, she has begun to have a major infection in that eye. We kept being told by the nurses that maybe she scratched it and to lay washcloths with warm or cold water over it. It kept getting worse. Finally a nurse came in last night and when she called the doctor, she thought it might be shingles. It sure does not look like shingles to me and I told her that. They said shingles can look different on different parts of the body. I finally sent a picture out to the nurse and asked her to send it to the doctor so she could see how bad it is. Her whole face is swollen with it. It is so hard because we can't take mom into the office as weak as she is so we are having to rely on the nurses to relay the messages to the doctor. I hope the picture helps them realize how bad it looks. The doctor did put her on an antibiotic for shingles so I hope that helps. I feel so sorry for mom. I know it has to hurt so bad!

Another issue mom is having is that she has lost the ability to know what to do if you feel like you need to have a bowel movement. She has the cramping and pain but cannot push. When I tell her to push, sometimes she will push her hands into her lap...but just does not know what I mean by "push". It is so hard to see her so uncomfortable. Last night, she started crying and said "It is still in there". She is so relieved every day when she finally has a BM. From what I have read, there is a fine line that you have to balance here. If you give them too much of a laxative, they may lose control and need to be in a Depends. But,on the other hand, you don't want the opposite problem because they need to stay regular. I hope that we can balance things out and figure out this delima too. Sorry if you the this is TMI but it is a big part of our life right now! I never realized that this could be an issue with an alzheimer patient. She will say, "Aren't you going to do something?" or "Just let me go to bed." Today she yelled,"Get me up from here, now!!" It is so frustrating for her!