Thursday, June 27, 2013

Blog 73: A Move Is Coming Soon

I'm getting ready to fly back home this evening to visit my mom.  So much is happening in that the time has come that my mom has run out of money and needs to be moved from the group home and placed in a nursing home that has a medicaid bed available.  I knew the time was coming.  It's unfortunate that now that she is in this lovely group home setting, with wonderful caregivers, she needs to leave.  The only good thing about it is she will be going back home, back to Iowa where she belongs, and where she should have been all along.  Back to the place where most of the family lives.  But, now she isn't going to remember most of them.  At least she will still feel comforted by their visits and sense something familiar about them, I hope.

I was included in a conference call a few days ago that had Renee, Kathy and Lynda on the other lines. Annie was not present for the conference call.  Renee told me that mom needs to be moved out of the group home and she found a place in Iowa that has a bed available.  The problem is, mom is no longer considered a resident of Iowa, and she needs to be for 30 days in order to qualify for medicaid there.  Paperwork needs to be filled out and submitted and it all takes time.  This was something Renee spoke of doing last year but for reasons I am not aware of, it didn't get done.

Renee said she wanted to know if Annie and I will rent an apartment to take care of mom for the one month interim before medicaid takes over.  She said if I don't, then mom will have to go to private pay until the money is spent down.  I felt like she was asking me only because she is desperate because funds are low and she knows that this process may take longer than a month and she is now wanting my help.  I asked her when I would need to take mom to Iowa and she said within a month.

When I told her that wasn't fair of her to spring this on me at the last minute she accused me of not wanting to do it.  I said that is not true, that I do want to help mom, but it takes time to find a suitable apartment (she suggested getting a furnished one),  and make all the necessary arrangements for securing hospice nurses and other help, as well as securing my home and making arrangements for the move and also the drive up there.   She knew I was coming up there on the 27th.  I'll have to fly back home and then turn around and drive back up.  I have heard her use the term that I come in at the eleventh hour to offer help, but this is exactly what she is doing to me.  Coming in at the eleventh hour to ask for my help.

I called Annie afterwards and spoke to her about this since Renee is too scared to call her.  Annie isn't sure she wants to take on this responsibility of caring for mom anymore, and I know I can't do it on my own.  Mom has advanced alzheimer's disease and requires much more care.  She is so angry with Renee for the way things were handled in the past and she said she knew this would happen.  As soon as the money runs out, Renee would send mom home and not want to have anything to do with being in charge anymore.  I don't know what to think.  I do know that Renee is done, she's exhausted.  She made that point clear on the phone.  She doesn't want to do this anymore and she ended up screaming hysterically on the phone and totally lost any sense of the world at that point.  I felt sorry for her, even though she brought a lot of it on her own by refusing to let me or anyone else help her.

I suggested we get together for a family meeting.  I said now is the time to do it...and how many times have I said that?  Maybe it will happen this time and maybe it won't.  We've all been talking about it, so I'm keeping my fingers crossed.  I want what's best for my mom and for all of us girls.  I hope we can reach an agreement and feel good about coming together as a family.

I'm really scared about what is going to happen to mom.  I'm scared of taking on the responsibility of caring for her, and I'm scared if I don't.  I just really need your prayer support.  Thank you everyone.  Thank you for praying for my family.

Friday, June 14, 2013

Blog 72: The Perspectives of Alzheimer's

The early stages of Alzheimer’s, from the person afflicted.  In this case, my mom. 

1. I want to drive my car.
2. Don't treat me like a child, I know what I am doing
3. They make me do things I don't want to do.
4. I can take care of myself.  I am fine!
5. Nobody understands me. Why won't you listen to me?
6. Where is my car?
7. Will you help me? Someone took my car keys, my purse, my money, etc.
8. I want you to know I love you even though I am acting differently.
9. I can't stand this. Get out of my house!
10. Don't make me take a shower, I just took one today.
11. I have lots of money that I have saved for you girls.  I've saved for years, but I don't know where it is.
12. I don't understand what is happening.

From a person who has a loved one with Alzheimer’s.  In this case, it’s me, saying what I said to my mom, and (what I wanted to say to her).

1. It's not safe for you to drive right now.  I will take you. (You might get in an accident and kill yourself or kill someone else).
2. Let me give you your medication at the scheduled time. (You can't take your medication on your own because you forget when you take it and you have been overdosing on it. You almost died, remember?)
3. Nobody is going to make you do anything you don't want to do. (We have to change your diaper now).
4. I know you can take care of yourself, I just want to be here to spend time with you. (Someone needs to be here with you so you don't get hurt).
5. I'm listening to you, mom.  (You just told me that a dozen times.  Or, now, I don't understand what you are trying to say).
6. Your car has been sold, but I'm telling you it's in the garage, at the house you no longer own, but you don't know that it is not your house anymore.
7. I can't find your car keys.  Maybe you put them somewhere?  Let's look for them.  Where did you last put your purse? (You have been hiding your purse and your money, I have been hiding your car keys).
8. I love to hear those words... I love you. (I hope you never forget me).
9. I know you don't like this, mom, but everything is going to be ok and I will always be here for you.  (I don't like seeing you like this. I hate this stupid disease, it is changing you and taking you away from us).
10. You need to take a shower (You haven't had one in a week).
11. You sure do have a lot of money, you worked hard for it and it is safe.  (Your money is gone, the long-term care costs have taken it away).
12. Everything will be ok.  We all love you and are here for you.  Don't worry about anything.  (You are dying and I am dying inside.  I am losing you, mom.  I can't live without you.)

What I think my mom would say if she understood what was happening…

1. I've lost my independence, which is the worst feeling in the world for me.
2. Thank you for coming to my house and saving my life that day I overdosed on my medication. I had no blood pressure.  If you didn't come I would have died on that fateful day in August of 2009.  But then again, if I knew I was going to live with Alzheimer's and dementia, I wish you wouldn't have come to my house.  I wish I would have died.  I never wanted to live like this.
3. I don't want people to see me like this.  I am doing embarrassing things and I have no privacy or dignity left.
4. Thank you for taking care of me and looking out for me.  I am scared and you make me feel safe.
5. I have so much I want to say but the words just won't come out right.
6. Please do what's best for me, for you and your families.
7. I'm sorry I blamed you for stealing my purse, my keys and my money.  You were only trying to protect me.
8. Always remember that I've always loved all of you more than anything in this world.  I want you to be happy.  That's all I ever wanted.
9. I can't believe I got the disease that I always dreaded.  A disease that changed me and made me say mean things to my loving daughters.  I wish I could take it all back.  I pray this never happens to any of you.
10. I'm sorry I put you through the pain of seeing me like this.
11. I know what is happening to me and to you, my daughters.  I know where my money went.  I know what went wrong with you girls.  I'm sorry you had to go through this, and I want you girls to come back together and stop fighting.  Do this for me.  I never raised you to be hurtful to one another.  I love you all so much.
12. Take care of each other when I am gone.  I will look down on you from Heaven and show you my love every day of your lives.  Watch for the signs.  You will see me all around you.  I will never forget you or ever leave you.  I live in your heart and you all live in mine, for eternity.  

Thursday, June 6, 2013

Blog 71: Visiting My Mom

I just came home yesterday after spending a week visiting my mom in the group home.  Upon first seeing her I noticed that she has lost some weight.  She basically hasn’t changed a whole awful lot since the three months have gone by from when I last saw her.  She has lost some muscle mass and control and sits somewhat slumped over in her chair, but she is able to walk as long as she is being supported on both sides.

I met the two new people who are her caregivers.  One is a woman slightly older than me, and her English is not very good, but she is very sweet.  The other is a middle-aged man who speaks good English.  Both are wonderful with my mom and I felt so at ease when I saw how they are with her.  I realized that my interpretation of my mom having feelings for this man, as I stated in my last blog post, were wrong.  My mom no longer talks about men or shows any signs of flirtatious behavior whatsoever.  Her giddiness from when we last spoke on the phone had nothing to do with the fact that a man was hired to care for her.  I believe, after observing her behavior, that it is due to whatever medication she is taking.  She would often start laughing for no apparent reason.  Anyway, this new caregiver asked for my phone number so he could keep in touch with me and let me know how my mom is doing and send pictures every once in awhile.  He understands that I miss her so much since I can’t see her as often as I would like.  He has sent me three pictures of her already.  I appreciate that so much since I don’t get any information from my sister who lives there.   

I saw how the caregivers change Mom’s diaper.  She is in a standing position and the man holds her up while the female changes her.  They said it’s easier that way.  She sure doesn’t like that.  It was really sad to see how my mom just leaned her head into the man’s arm and cried 'noooooo' as the woman took care of things.  She also complained loudly one day when the aides came to give her a shower.  It’s a two-person operation and mom sure let them know how much she hated it.  When they finished and were walking her back to her room she said ‘shit’ as she struggled with each step, shaking from the traumatic experience.  They sat her in her chair and left, as mom cried real tears.  She said, “I don’t like this,” as she cried so sadly.  I told her I know she doesn’t and I tried to reassure her that I will do whatever I can to make her happy.  She looked at me with a ray of hope in her eyes and said, “You will?”  She just seemed so defeated and it took several minutes to reassure her that everything is ok, and that it will be several days before she needs to have a “damn, stupid shower again!”  That made her laugh and we were on our way back to being happy again.

When I visit my mom I always get out my laptop or my iphone and show her old pictures and current pictures of the family.  She has forgotten so much.  I am trying to keep her memory alive, struggling to, but not being successful.  In any event, I feel that this is important for me to do.  Occasionally she will recognize someone in the photograph or at least seem to show some memory of it.  The picture on the top is of her looking at a picture of herself when she was younger.  Last time I showed her she recognized herself but I wasn't sure she did this time.    

The lady who runs the group home stopped by and told me that the doctor was there recently and met with her and Renee and discussed some things about my mom and her treatment.  She asked me if Renee had spoken with me about it.  I said that Renee and I don’t talk anymore.  She said she is so sorry and she told me his name and said that I could call him to find out what was discussed regarding my mom.  I said that I can’t do that because Renee doesn’t want anyone talking to the doctors or nurses about mom’s condition.  She said, “What?  You are her daughter!  If my sister did that to me I would be so very upset with her.”  I told her that I am upset with Renee but I can’t do anything.  She withholds all information from me because she is in charge and wants it that way.  This kind woman told me to write down the doctor’s number, it’s on the refrigerator, and she said, “You call him anyway.”  I said I can’t, but I appreciated her understanding of our situation.  I did write down the doctor's name and number, but I won’t be calling him because I'm sure he won't be able to talk to me. 

I brought my mom some treats on different days.  I brought her favorites…potato chips, chocolate candy, ice cream, and coke.  She loves those treats.  I also gave her a little purse with pockets and zippers and different compartments that she could play with.  She is always fidgeting with something, so I thought she’d like that.  She sure did, too, and must have worked the zippers and flaps for an hour.   Mom always liked buying new purses.  Her caregiver told me that she said, “Lizzie gave this to me.”  She remembered!

I painted mom’s fingernails and she held her hands motionless so I could do it.  Then I held her hands as the polish dried.  Mom let me rub her shoulders and her neck and arms.  She let me kiss her cheek and hug her and get close to her.  I saw a video of someone showing that if you get right up to the face of a person with Alzheimer’s, and get really close and look into their eyes while stroking their temples and speaking softly, that they will respond and come out of their world somewhat.  I did this with mom and oh boy, does it work!  I didn’t stroke her face because she didn’t seem to like it but I did get very close to her face as I held her hands, and I would say, “Mom, look at me, look at my eyes.”  She would do it and I cannot even begin to explain how this seemed to transform her into a blissful state.  She seemed to feel at ease, comforted, safe, loved, and she and I bonded when I did this.  I actually got a couple of videos of doing that with her.  I sang ‘You Are My Sunshine’ to her and she just looked into my eyes.  It was so wonderful.  I really feel that we both could deeply feel each other’s love.  I am so happy I got those beautiful moments on video.

Mom was not able to say her daughters’ names when I asked her but she was able to read them when I wrote the names on paper.  She couldn’t read her own name but she was able to read other words and even spell a couple of words.  She did know who I was because she would say my name while we were talking.  Yet if I asked her who I was she wasn't able to say my name.  It’s weird.   She also would say someone in the family’s name just out of the blue.  She mentioned her sister, three of her granddaughters, a grandson, and two of my ex-boyfriends.  She only said their name and that was all.  I don’t understand her mind but I am learning to accept what she says and does and communicate with her in ways that works for us. 

I told my mom I love her many, many times.  Most of the time she said it back to me, and probably not remembering that I just said it to her ten minutes prior.  She offered some words to me, too.  She told me I am beautiful and she said that I am perfect.  Those are words a mom tells her child, and those words tell me that she is still nurturing and loving her daughter. 

My son, daughter-in-law, and grandson came into town from California to visit my mom, their nana.  My daughter who lives close by also came for a visit.  She’s the one I stay with when I am in town.  It was sort of like old times.  Everyone enjoyed the company of my mom and she enjoyed their company, too.  My three year old grandson sang a song that he learned in pre-school to sing to his mom for Mother’s Day, and he modified it and changed the words from mommy to nana.  It was to the tune of ‘You Are My Sunshine’, the song I always sing to my mom.  It went like this…you are my nana, my special nana, you make me happy when skies are gray, you never know nana, how much I love you, so please don’t take my nana away.  He sang it perfectly!  My mom loved it, I could tell.   It took a little while for my grandson to warm up to her but when he did, he was being very loving to his great nana.  He seemed to understand her limitations and the way he related to her was very touching. 

On the last day of visiting my mom, Renee came in.  It was pretty uncomfortable but we managed to talk more as we realized neither of us was going to choke the other.  I don’t even want to get into what all we talked about but basically it went ok. I asked her about her kids and she didn’t ask about mine.  I told her I was proud of her after she told me about what she is doing for work.  I was a good sister and a good listener.  I told her I miss her.  I said that I am so sorry that we have all fallen apart and that we are no longer close.  I told her that life is short and we should do everything we can to make things better.  It won’t get better on it’s own, and by ignoring each other.  She tried to bring up old emails and texts and I felt my blood pressure going up.  I told her to let it go because we will never move forward when we keep going back.  I really don’t see anything changing after our talk and I’m still going to stand back and wait for her to initiate the next move.  I didn’t even ask her about the doctor visit or anything. 

I asked her how long Mom is going to be at the group home because I know her funds are running low.  She said for about two months and then she will have to go to another facility that has a Medicaid bed, and probably back in her hometown.  It’s like, she took her away, spent all of her money, and now she’s ready to ship her off back home.  Of course I didn’t say that to her.  I did say that she is our mom and I wish there was some way that one of us could take care of her.

Mom is scared.  I can sense it.  I don’t want her to be afraid.   Renee said that mom doesn’t want to live like this.  Of course she doesn’t.  She has no choice and we don’t either.  We have to make our mom feel safe and loved.  That is our job.  She gave us our life, we can’t give up on her.  We have to give her the best life we can because her life is in our hands now.