Blog 67: The Other Part of Life | Keeping Life in Balance

My blog has been written with so much emotion and heartache.  I can be such an emotional wreck when it comes to my mom and what's happened with my sisters.  I’ve not spent much time writing about happy things.  It’s the nature of the subject, Alzheimer’s.  Seeing my mom suffer with this disease has been the worst thing I’ve ever had to endure.  But as I have said before, we all have to live our lives and find enjoyment and happiness, because we only have one shot at life.  We have to maintain that healthy balance in order to have any quality of life.  My mom would want that for me, and for all of her daughters.  I try my best to continue to live a life that my mom would be proud of because she was always so proud of me before.   She wants me to be happy, and that is the greatest gift I can give her.

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."

Let me take you away from Alzheimer’s and dementia in this blog post and tell you a little bit about me and the other part of my life…

I am first and foremost a mom.  That is my primary role, and what I feel has been my purpose in this life.  Even though my kids are now adults, they are still and always will be my world.  I would do anything for them, and I learned how to love that way from my mom.  I am very much a family oriented person.  My life is not one of fame and fortune, or of making a huge difference in the world.  It’s about making a difference in the lives of the small group of people I have the privilege of sharing my life with.  

When I was a young woman, at 18 years of age, I married my high school sweetheart.  We had three absolutely wonderful children.  I stayed home and raised them until the youngest was in school.  I took a part-time job and eventually worked full-time when the kids were older.  Our kids were very involved in sports, dance, music, and drama, and we met ourselves coming and going with all of their activities, and our jobs.  We also designed and built (by ourselves) a log home in the country. 

The marriage lasted 25 years and we parted ways once we realized we grew up and grew apart.   My ex and I get along well with each other and make it a point to keep our family unit intact.  Our kids said that they had the best childhood, and a parent couldn’t ask for anything better than that.  I feel proud to have been a part of the reason for them feeling that way.

My oldest daughter is married, and has two little girls.   They live less than a mile away from me in Arizona, and are the reason why I moved here.  I wanted to be near my grandchildren, who are now 3 and 4 years old.  It’s wonderful to have these little ones around to make me smile, laugh, and feel young again.  Nothing feels as good as my little grand kids running into my arms, excited to see their Nana.

My son is my middle child, and he and his wife live in California.  They have an adorable little boy who is three years old.   When I made the decision to leave Iowa, I couldn’t afford to buy a house in Marin County, where my son lives.  Hence, I didn’t move there.  At least I am in closer proximity now and it’s easier to travel there from here.  It’s important for me to have a close relationship with all of my grandchildren, so between visits with my grandson, I keep in touch with him by phone and skype.  It's wonderful that we have the technology that allows us to see and interact with each other like this.  I am going to see them in person next weekend and I can’t wait!
  

My youngest daughter lives in Chicago and is engaged to be married next year.  I'm thrilled to have all of my kids married to wonderful people, who I consider my kids now, too.  I’m still working on trying to get them to move here but my daughter is not ready to leave yet.  I get to see her often since I go back to Chicago to visit my mom.   All of my children have grown up to be caring, compassionate, smart, successful, and loving individuals, and I couldn’t be prouder.   

Family is so important to me and I just wish all of my family could live near each other.  If Iowa would have had the job opportunities for my kids’ in their chosen careers, they wouldn’t have left Iowa and I’m pretty certain we would all still be living there.   Like many families, though, we are spread out across the country. 

I worked for many years in the social service field for not-for-profit organizations, then for a law firm, and lastly a financial planning firm.  I am 56 years old and retired.   My days are now spent working in my yard, blogging, volunteering, assisting my daughter with her photography business, traveling to see my family, working out at the gym, jogging, hiking, spending time with my friends, and now...wedding planning.  I’ve also taken up painting as a hobby and have set a goal to do two paintings a month.  I’m also big into organizing and I know exactly where everything is in my house.  I should have become a professional organizer.  :)

I love to travel and try to go someplace new every year.  Last year I went to Alaska for the first time.  I lived in Europe for one year in high school and went back to Europe for a month of traveling four years ago.  I’m adventurous and passionate for life, and always up for something fun to do.  I am enjoying this part of my life right now.  My friends are awesome and have been there for me so many times when I just needed to talk to someone.  They've filled the void where my sisters once were.  I have a man in my life, who is so supportive and wonderful to me.  I feel healthy, in shape, still look young (so I’ve been told), and am so grateful for many, many things.   I thank God for His blessings.

Is everything perfect in my life...(the life outside of Alzheimer's)?  No, not at all.  I have made a lot of mistakes in my life, and I know that that's just part of being human.  I just choose to be happy.  It's a choice. 

Those of you who are reading this and are living with someone with Alzheimer’s, please remember to take care of YOU.  Find a way.  Your loved one would want that for you.  Keep a healthy balance in your life.  It can’t all be bad.  Believe me, I know it can be hard at times.  Try to have fun and do something that makes you happy.  Life is short, and life can be taken away from us at any moment.   There’s a time and a place for living your life, and it is NOW. 

Blog 60: Another Year Older

Today is my mom’s birthday and she turned 77 years old.  I don’t think she understands that, at least that’s how she seemed when I talked to her on the phone. There was no excitement, or even any complaints about being another year older.   It was like this was just an ordinary day for her, full of confusion and sadness.  But it was a special day for me.  She doesn't have the memories that I have of her past birthdays.  There were many good ones.

She’s getting up there in years but she is still young by many people’s standards.  It’s all relative to how healthy and active you are I guess, and since she is sick, she is far from young.  I know from volunteering in a nursing home that even people in their 50’s can be ‘old’, and then I see 70 year olds in the gym who are anything but old.  

When I called for Mom one of the caregivers at the group home helped guide Mom with the phone since she doesn’t have good phone skills anymore.  The same lady answers whenever I call.  She doesn’t speak very good English, but she understands that I want to talk to my mom, and she is very good about helping her with the phone.  I don't know what she does, but I imagine her standing close by, just observing and making sure Mom keeps the phone in her hands. 

Mom knew who I was as soon as she heard my voice.   That is always a relief to me.  Hearing her say my name always melts my heart.  At least she still knows my name, even though she can’t seem to remember anything else about me.   I don't even know if she knows who I am, but the voice recognition seems to help her.  

I told my mom I love her at least a dozen times during our 15 minute conversation…if you can call it a conversation.  It was more one-sided, but that’s just the way it is now.   Out of the many times of saying I love you, Mom said it back to me twice.  I hold on to those words from her and that gets me through to the next time I get to talk to her.  Her voice was so pure, so soft, and so quiet.  As much as she has changed, her voice is still the same, even though it is weaker and quieter.    

Mom used to like to spell words and she was so good at it up until some time in the past year, when those skills seem to have vanished.  Now she doesn’t spell anything.  She doesn’t even understand the question when I ask her if she wants to spell something. 

I sang Happy Birthday to her but she didn’t really seem like she even knew why I was doing it.  I made small talk with her but most of the time it was me asking her questions and her not answering me back.  Many times I had to repeat myself after asking her if she could hear me.  Her hearing seems to be a lot worse.  Mom sounded very tired and weak, like she was ready to fall asleep, even though she had already had her morning nap.  

I kept having to ask her if she was there because she was so quiet.  I bet I said 'Mom' a hundred times.  I said ‘Mom’ because I was continually asking her if she was still there.  I said ‘Mom’ because I know the day will come that I won’t get to say ‘Mom’ to her because she won’t be here anymore, and I like saying 'Mom' because it's more than a word or a name, it's an emotion.  Call me weird, but that's how I feel.  She would quietly and weakly say, “what”, like she didn't even hear what I said, so I would tell her I love her again.   I wanted to make sure if I said I love you enough times, she would hear it and remember.

Blog 55: My First Alzheimer's Support Group Meeting

My mom was moved from the nursing rehab facility to a group home last week.  I like this idea of her being in a group home better than a nursing home.  She is still three hours away from most of the family, and I don’t like that, but I can’t do anything about it.  I just hope Mom adjusts and starts eating again.   

Renee set a rule that we are not allowed to call her or even know the location at this time.  She sent an email and said that she will send a weekly email to tell us how Mom is doing.  That’s it!  It just irritates me when she put in the email that she and her kids and her husband have been going there often to see her.   I’ve about had enough of her control issues that I could scream!  Mom has FIVE DAUGHTERS WHO LOVE HER and want to be a part of her care and her life and everything that Renee allows herself to be a part of. 

Mom still has not been eating and I got a text yesterday morning that Renee was going to take her to the ER if she didn’t eat her breakfast.  She texted later and said that she ate a little so she didn’t take her in.  We will see how it goes.  But Mom has been moved four times in the past month and that is probably a big reason why she is not eating.  I’m sure her UTI has not gone away yet and that may be another reason.  I hope it isn’t something worse…that Mom is giving up…not willingly, but I know that people stop eating in the final stages of the disease.  It makes me so sad.  Christmas is coming.  L

I went to my first Alzheimer’s support group meeting yesterday morning, and I almost didn’t go because I was so upset about my mom not eating and having to go to the hospital again.  I have been wanting to go to this support group for the past four months, but something always came up and got in the way of me attending.  It was my chance to finally go.  I decided at the last minute that I needed to do this, so I threw on some clothes, washed the tears off of my face (knowing I’d be crying again soon) and drove to the meeting. 

I was the only new member there out of about 15 people.  When the group leader asked me to share my story, I did, and, oh boy, I started crying.  I tried not to but I couldn’t help it.  I cried, and cried, and I had to cover my face in my hands and take a moment to recoup.  When I looked up I saw compassion and even tears in other people's eyes.  I knew then that I was not alone, that they really did understand because they are living this nightmare in their own personal lives. 

I released all of the emotion I had inside as I shared with them as much as I could.  Once I started talking, I could not stop.  I eventually stopped crying and I was able to fill them in from the beginning to the present time.  I felt that they were on this journey with me and I didn’t need to over explain anything.  It felt so good to let it all out and get some advice from others who have been down the road I have.  I never felt so good about sharing my story as I did at that moment.  I felt such a release and a wonderful response of love and support and understanding.  One woman came up to me afterwards and hugged me. 

I finally had affirmation that I should not feel guilty about moving away, and that my sister Renee has handled her powers of attorney in a way that it was not meant to be, which has caused the dissention in our family, and she is never going to change.  I need to keep my distance from her and be in control of me, and be there for my mom in the way I have been, and be there for my kids and grandkids, who need me.   I was reassured, as I have been told by other people I am close to, that I have done so much for my mom and I should be proud of how I’ve tried to fight for a better life for her, and for trying so hard to bring my sisters back together again. 

Two group members told me I need to play the game that two of my sisters have learned to play in order to stay in the loop and get information from Renee about my mom.   I need to keep our conversations in brief texts, no matter what Renee does.  I told them that Renee is cruel with her words and her lengthy emails are very hurtful to me.  As hard as it is to ignore them, that is what I’ve been doing.  Sometimes I write a response but then I don’t send it.  It just helps to write it, I guess. 

One lady told me she can see that I am a very well-balanced person, who has empathy and compassion and that my nurturing nature and love for my mom and my sisters shows in every word I speak.   I even defended Renee in trying to explain why she does what she does.  It was unanimous amongst the group members that I should take the powers of attorney away from Renee.  I just don’t want to keep the fight going.  I want peace, forgiveness, and love with all of my sisters. 

I can’t wait to go to another meeting.  One of the women there has been going to this support group for seven years.  That says a lot about this group.  I felt so warm and welcome as soon as I entered the doors of this church.   I am so glad I went. 

My volunteer work at the nursing home has been a wonderful thing for me.  I live so far away from my mom and I can’t see her as often as I would like, so spending time with other elderly residents has helped me cope with the longing I have for my mom. 

One of my new friends there is a 64 year old woman, still so young for a nursing home, who is wheelchair bound, and has some Parkinsons and arthritis.  I'm sure she has many other health issues.  She speaks very softly and barely moves, other than the trembling of her hands.  When I touched her hand, the shaking stopped.   I am learning about her life and she seems to enjoy sharing her stories with me, even though she doesn’t make eye contact.  She asked me if she knew me and I said no, but I want to be her friend.  She smiled and looked up at me at that moment, and I knew I was where I needed to be.  A staff member told me she has not had a visit from a family member since she arrived there four months ago.  I don’t know the full story, so I am not going to judge.  I am just thankful that she came here from another nursing home, and maybe we crossed paths with each other for a reason.  I think she is going to help me as much as I can hopefully help her.

Blog 49: The Lonely And Forgotten, My First Day As A Volunteer

Today I started my first day as a volunteer at a local nursing home.  I job shadowed a woman whose job is to push a juice cart down the halls and offer juice and cookies to the residents.  When she is finished with that, she wheels them into the dining hall for lunch.  This was a good way for me to go into all of the rooms and see the people and get an idea of who resides there.

The woman I was working with has been doing this job for six years.  She is 84 years old and rides a bus to and from the nursing home, spending $8 a day on bus fare.  She told me she is getting tired of the bus, and I started thinking to myself that maybe I can pick her up on the days I go there.  Her husband was a resident and passed away at this very place.  One of the staff told me she is getting very confused and she has fallen a few times.  This is her job though, and she takes it very seriously.  Clearly, this is what she lives for.

I would like to say that this isn't a totally new experience for me.  About 12-14 years ago, I had organized a small group of junior high school students for weekly visits to a local nursing home near the school.  It was a very rewarding experience for the students, as well as for me.   I had sign up sheets and it became a very popular thing for the kids to want to do, and this program continued for two years.  I'd have to say that just as the kids couldn't wait to go to the rooms of their favorite residents, I was the same way!  We had one to one visits as well as planned group activities where the students worked with the residents on art projects, playing the piano, playing board games and cards, and singing songs with them.  That was such a wonderful memory for me, and I have heard from some of my students today, that they still think of that time.

Back to today, one thing I noticed about this nursing home is that everyone uses a wheelchair, and many of them look to be in their final stages of life.   This is what many nursing homes are like, though.  There were a few people that struck a chord with me.  One woman was sitting in her wheelchair by the window.  She had very long, gray hair, and it was all matted in the back.  She spoke rather well, but I could soon tell she is suffering with some sort of dementia.  She was watching a couple of Mexican workers doing some repair work outside and she said that one of them is her son and he comes there everyday to see her through the window.  Neither of the men seemed to pay any attention to her, yet she was marveling at her 'son'.   I'm sure he was not her son,  aside from the fact that he didn't notice her, she is caucasian.

Another man was sitting in the assisted dining hall, in his wheelchair and facing the wall.  I didn't notice what he was watching, as I was more interested in meeting him.  He said he would like some juice.  He is one of the residents that needs some thickening agent in the juice, so I made it for him and placed it in his hands.  I glanced at the wall he was facing to see what he was watching on the television, and saw that there was nothing there but a blank wall.  That made me sad.  I think he's going to be one of the men I'm going to want to spend time with.  But I don't know how responsive he is yet.

Then there was a woman laying in her bed, who seemed rather weak, but was able to speak with some effort.  She looked very sickly, but not too old.  She told me she was 58 years old.  That's only two years older than me!  I don't know her story yet.  It made me count my blessings that even though I am right under her in years, I am still very active and able to enjoy my life.

One more person I want to tell you about is a woman who was sitting in her wheelchair, holding and admiring a little doll.  I knelt by her and asked her what the baby's name is.  She didn't have any teeth in.  She seemed to want to say something but all she did was smile when I spoke to her.  I put the doll's hat on and this little old woman smiled back at me.

This facility is a nice place and seems to have a lot of staff moving about, tending to the residents.  As with all nursing homes, there are certain odors that just go with the territory.  I am pretty sure I can get used to that.  There might be a bit of a communication problem with some of the residents because they only speak Spanish, and for those people, I guess hand gestures and hugs will have to do.  I'll take it one day at a time, and learn as I go.

I'm sure that there will be lots of interesting stories to tell, but obviously this blog is about my mom, so I don't intend to share too much about my volunteer work on this site.  I think that visiting these residents will help me feel like I am doing something to help someone, since I am not able to be there on a regular basis for my mom.   I'm hoping, somehow, this will help me deal with that.

It's really sad seeing people who are at the end of their lives.  I have the desire and feel that it's important for me to contribute to my community, and I can't think of a better way to do it than this.  I hope that it works out, and that it will be a good thing for all.  It's going to take some strength on my part, but I believe I have it.

"Dear Lord, please wrap your arms around those who are hurting today and let them know that you love them."