Blog 70: She's Sexy and She Knows It

My mom was all giddy when I spoke to her on the phone the other day.   I knew the reason why as soon as her caregiver told me they hired another person, and it’s a man.  That explained her giddiness.  Ever since Mom became ill with Alzheimer’s she has taken a renewed interest in men.  I remember how she fell head over heels for a young caregiver in his twenties at the assisted living facility she was in a year and a half ago.  It’s almost like she is a young schoolgirl in love again.  She misunderstands the care and attention she receives from them as if they have romantic feelings for her.  It’s not every man, only the ones who are very sweet and caring towards her and engage in playful conversation.   You can’t blame her for that, isn’t that what most women like? Alzheimer’s hasn’t changed that part about her.  

My mom was once a very sexy woman with a gorgeous body and beautiful face.  Men adored her.   That, I know.  I think she knew she was sexy when we were young girls, though she never acted that way.  She was very modest.  She didn’t fall for men as easily as they fell for her.  I do remember watching her get all dolled up when she went on dates after my parents divorced around 1969.  I just sat on her bed and watched her put on all that stuff before she even put her dress on…bra, panties, garter belt, stockings, slip, perfume, powder, make-up, and rollers in her hair.  I thought, geez, I don’t ever want to grow up if I have to put all that stuff on!  I only wish I had pictures of her then.  She was not one to take pictures, so all of that is only a memory I have.  It is no longer a memory of hers, so I am keeping it safe for both of us.

Here's a picture of my mom and dad.  I'm not sure of the year but I think it was after my birth in 1956.  My mom went on to have four more daughters but she never lost her beautiful figure.  I showed her this picture three months ago and she said her name and my dad's name, and acted as if it wasn't even her.

Just moments before talking on the phone with my mom, I could hear her yelling at the top of her lungs as this new man was walking her down the hallway to change her diaper.   I hate using that word and much prefer to use the term undergarment, but the reality is she can no longer use the toilet, and so she goes in her diaper and has to be changed like a baby.  And sadly, my mom doesn’t see that as a total embarrassment as she would have just a couple of years ago.  What choice does she have anyway?  She doesn’t even know herself anymore.  She used to always say she had a shy bladder and she never wanted anyone to be around when she used the restroom, let alone a man.  Life is different for her now. 

I chatted with this new caregiver and got his name before he gave my mom the phone.  He speaks good English, so I am happy that I will be able to talk to him more easily about my mom.  I told him I will be visiting my mom next week and I look forward to meeting him.    Soon I will get to see my mom again.  Excitement and apprehension is what I always feel before I see her.  I know, I know, my mom may not recognize me when she sees me.

Mom took the phone and we had our usual, yet very unusual, conversation.  However, she was laughing more, right from the get-go.  She was giddy, maybe love struck again?  Does she feel sexy?  And you know what?  I hope she does.  I am certain she had already forgotten about getting her diaper changed just moments earlier.  As I said in a previous post, Mom doesn’t make much sense anymore.  Her voice is exactly the same and I so love to hear her voice.  Most of the time I just talk and ask her if she is still there and she responds with a ‘yeah’.   I sang ‘You are My Sunshine’ like I always do and she made some la, la, la sounds.   I told her that her granddaughter, my daughter, is getting married next year.  I’ve told her that many times before but of course she doesn’t remember.  It’s really heartbreaking that she won’t be able to attend the wedding, though I try not to think about that.  Mom asked me if she has a baby yet.  I was surprised to hear her say something that actually made sense.  She used to tease my daughter and her boyfriend about when they are going to have a baby.  Then I asked her if she could name her daughters because she seemed to be just a little more ‘with it’ than usual.  Of course she couldn’t, and all she said was, “There’s a lot of them in the garage.” 

It was good to hear my mom laugh and be happy, even though it’s sad that she is not the same.  I guess if she’s going to have Alzheimer’s and dementia, she might as well enjoy herself and be happy in this mixed up world of hers, because it's better than being miserable.  I certainly don’t want her to be as sad as I am that she is drifting away and losing herself and all of the memories of her daughters and everything else about her life.  If she feels sexy, then I can smile, because that will make her happy.    

Blog 69: Feelings of Guilt | Talking on the Phone

Sometimes I like to make personalized cards for the special people in my life.  Here's a simple card I made for my mom on Mother's Day.  On the front is a picture of one of my paintings... 

It’s been three years since my move to Arizona.  So much has happened during that time, with Mom’s illness and the family struggles since then.  I’ve often beat myself up with feelings of guilt for even leaving Iowa in the first place.  What could I have done differently?  Would I have been able to keep Mom in her home longer?  Would I have been able to save our sisterhood?  I guess I’ll never know the answers to those questions. 

I do believe that I could have done a better job than what my sister has done in communicating with all my sisters and letting them know what’s going on with Mom.  I would not have isolated anyone.

I also believe that if I were in charge, Renee and I would be in huge conflict, just as we are now, but for different reasons.  So I think I just answered one of my questions. 

My mom chose me to take care of things, and I feel I let her down.  Way before she had Alzheimer’s she told me she never wanted Renee in charge of anything.  She told me that the day she had her Will prepared.  Her words keep resonating in my mind.   When am I going to be able to stop torturing myself for this?

Everyone tries to make me feel better.  My kids, two of my sisters, my friends, my mom’s sister, my mom’s friends and other family members, all tell me that it’s not my fault.  I didn’t create the problems that Renee created.  I didn’t know what Renee was going to do.  I couldn’t predict the future, and I believed Renee when she said she was going to do the best job for Mom, and that she was going to make sure we were all well-informed of every decision she makes. 

I don’t mean to be picking on Renee.  I’m sorry to keep bringing it up.  I know in her mind she thinks she’s doing an excellent job.  I sometimes wonder though if she is also beating herself up for the decisions she’s made.  I wonder.  I know she loves Mom just as we all do.  It’s just that we are so different in our beliefs.  I do know that Mom would be furious with her for some of the things she’s done, and on the same note, she’d probably be furious with me for letting it happen. 

All of that is in the past and the only reason why I am bringing it up now is that I have often wondered what I could have done differently.  Was there something I could have done to save our family and to grant some of those wishes Mom had?    

Kathy and I talked about some of these things on the phone the other day.  She’s so easy to talk to, and so is Annie.  Thank God I have them to talk to.  I asked Kathy if she ever calls Mom.  She lives a distance away from her and only travels to see her about once a month.  She said, “Oh no, Mom can’t talk on the phone anymore”.   I don’t even need to say where she heard that from but it’s the same person who told me that.  The thing about Kathy and Lynda is that they hear that and they automatically believe it to be true without even questioning it.  That’s where I am different.  I will try anyway, and when I do that it appears that I am challenging ‘authority’, meaning, ‘Renee’.

If I believed what Renee said, I wouldn’t have known that I can talk to mom on the phone.  If I tell Renee that I want to try to talk to mom, she gets mad at me.  That’s the problem we have with each other. 

It’s sad that Kathy believes that Mom can’t talk on the phone anymore because she is missing out on hearing Mom’s voice and having those sweet, touching moments with her.   Mom is missing out on hearing her daughter's voice, too. It’s her choice though if she doesn’t call and monthly visits are enough for her. 

I live too far away from my mom and I couldn’t bear to not have any contact with her between visits.  I can only get back to Illinois about every three months.  Just hearing her voice is all I need to feel comforted.  She used to only hold the phone to her ear for about 5 minutes before she would set it down, but for some reason the past few months she has been keeping that phone to her ear for 30, 40 and 50 minutes at a time!  I truly believe that she needs that comfort, that connection with me, with anybody who is on the other end of the line.   Otherwise she just sits in her chair, day after day, with hardly no visitors.   Loneliness is a feeling even Alzheimer's patients can feel.  

Mom’s two caregivers quit and now there is a new caregiver.  She gives Mom the phone and then leaves the room, so I have to do my best to keep her engaged and on the phone.  Somehow I’ve figured out how to do that.  She is better on the phone when no one else is in the room anyway.  Her phone skills are definitely not what they used to be, as her attention span, vocabulary, and communication skills have declined considerably.

Every time I talk to Mom I sing ‘You Are My Sunshine’ to her.  She used to sing it with me but not anymore.  The other day I sang it to her and I heard her crying.  I said Mom don’t cry, I want you to be happy, and she said she didn’t know what was wrong.  I hate that when she says that.  My mom knows there’s something wrong with her.  I think she has things she wants to say but she can’t get the words out.  It literally breaks my heart.

Once in awhile Mom says something that shows me that she is still that caring Mom she always was.  She asked me the other day how I was feeling.  I thought that was sweet.  I usually bring up things that I feel that she will remember, that are embedded in her mind.  She’s forgotten so much.  She did choke up when I mentioned her great grandson’s name.  She does remember that boy, and the feelings showed. 

I’ll be going to see my mom soon and I already know she doesn’t know my name.  She says my name sometimes but she doesn’t know that’s whom she’s talking to.  I believe she feels a familiarity with me and she feels comforted by my voice.  Kathy said that Mom doesn’t seem to know who she is anymore when she goes to see her.   Times are going to get harder. 

I know that deep inside my mom she will never forget us.  She has emotions inside of her that she can’t express but I can see those feelings of tenderness in her eyes.  We are a part of each other and never to be separated.  She senses that and is comforted. Mom will always love us until the day she closes her eyes and takes her last breath.  I believe that, even if she looks at me like I’m a stranger, she will know me deep in her heart.  I am comforted in that.  She will take with her all the love and wonderful memories of her daughters and her grandchildren, whom she loved with all of her heart and soul, and they will follow her in death.  We will have all of that love and those memories in our hearts too, so we will never be parted.   

"A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.”

Blog 68: A Special Thank You

My blog has given me an outlet for my pain and despair.  It’s allowed me to openly express my feelings, to vent, to reflect, to remember, to share, to hope, and to help others on this journey.   I've helped myself, too.  Just the simple fact that the thought processes that go into writing a post, have enabled me to sort through my feelings and dump it out of my head, so to speak.  It’s therapeutic.

There’s no doubt that this ugly disease has changed my family.  We are no longer the same.  Seeing our mom suffer like this has been the greatest suffering my sisters and I have endured.  The residual affect is the way we have chosen to press forward.   We are separated.  It’s not the right way, but it is the way we are doing it, for now.  

I pray that my sisters are finding comfort for their pain and despair, too.  It hurts me to know that I can't be there for them.

There are so many people to thank for being there for me, for supporting me, encouraging me, and loving me along the way.  Without them I wouldn’t be able to go on.  My biggest thanks goes to my children and grandchildren, who have been my saving grace.  They are my reason for being able to live happily, in spite of everything, and that happy place is safe in my heart.  I have a wonderful future with them no matter what.

I would like to thank those few special people I have elected to share my blog with.  At first I didn’t want to share it with my friends because I write with such raw emotions and I didn’t want it to affect how I write, knowing they are reading.  But I have come to realize that I really needed to have some support from those who know and care about me.  There’s nothing for me to be ashamed of or try to hide.  

To those people, thank you for reading, and for your words of encouragement and advice. I’m sorry I’ve made you cry, but I know you only do that because you care about my family and me.   I appreciate you for standing by me, and for your love of my family, and for your prayers for better days.

Thank you to my faithful blog followers, the people who don’t know me personally, but who share a common interest and want to know how our story unfolds.  Your encouraging words, emails, comments, and stories you share with me, only reinforces my reasons for doing this blog.  You have touched me in ways I never thought possible, and you have no idea how much I appreciate you.  We are like family because we are in this together. 

Also, I have a special thanks to the Remember for Alzheimer’s community for highlighting my blog on their Facebook page.  That simple act did wonders for me, and made my blog visible to others who would have no way of knowing about it otherwise.  I received over 3,300 views in one day!  Now I have more people following my blog, and people who have reached out to me to share their stories with me.  That’s what every blogger wants.  So, I thank them from the bottom of my heart.

Recently I was contacted by a reporter, who came across my blog while doing research on Alzheimer’s, and asked for my participation in an article for publication.   I was happy to help out in any way I could. 

My blog matters to people.  So many people are affected by Alzheimer’s and dementia in one way or another.   I will continue on, and hope that my efforts to share our journey will help others and also bring me comfort along the way.   We all want love, answers, encouragement, advice, help and understanding, when it comes to living a life with Alzheimer’s.  Thank you all for what you’ve given me.  I only hope that I can return the favor.  

Please stay tuned to my next blog post, that I promise will be heartfelt.  Until then, may God bless each and every one of you!  

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 66: Song, and 50 Minutes With Mom on Easter

My mom was one of those talented people who could sew, paint, and cook, just to name of few of her many talents.  She made the best potato salad and meatloaf.  I wish I could make it the same but that's just impossible.  Last night I made an attempt to replicate her potato salad for our Easter cookout today, but it just doesn't compare.  I thought about her every step of the way and felt as though she was with me, guiding me in the process. 

I can’t help but think about my mom when a holiday comes around and today is no exception.  I guess I think about her so much because everything started with her.  All of my early childhood memories involved her.  It’s pretty clear she has been a huge influence on my life and no doubt on my sister's lives as well.  My mom was made for us, and we were made for her.   This beautiful song just says it all.  It's called The Story...

 

It was three years ago that we celebrated the last family Easter at my mom’s house.  Much has changed since then.   Her house has been sold, Mom is in an elderly group home now, and her Alzheimer’s has taken much of who she was away and left a weak, feeble body.  This horrible disease has taken it's toll on our family, too.  Here’s a picture of my family in happier times when we were much younger.  This was taken on Easter, in 1965, at my grandparent’s farm. 

I called to talk to my mom on the phone today and got an extra special surprise.  Usually I can only keep the conversation going for about five to ten minutes before she hands the caregiver the phone or the caregiver takes the phone, but this time Mom held the phone up to her ear and we talked for 50 minutes!  The caregiver walked away and left Mom with the phone and surprisingly she held the phone steady by her ear. 

Most of the time the conversation was one-sided and revolved around me trying to get her to talk or answer questions.  She never asks questions anymore so it’s pretty much up to me to get her to talk.  Even though much of what she said didn’t make sense, I’m beginning to understand her language and take from it what I think she is trying to say.   She usually only gets the first part of a sentence out before she stops talking, and I assume it's because she forgets what she was going to say or she is unable to formulate her thoughts.  She did however say some memorable things and I always write those things down.   It's like keeping a part of her with me forever.  I cling to those moments of clarity and meaning in her words.

I must have told her I love her twenty times and each time she said it right back to me. I love hearing those words come out of her mouth.   She couldn’t say my name and she couldn’t name her other daughters.  I tried to help her by starting with my name and going down the line but nothing would help.  She couldn’t say our names today, but maybe she can tomorrow.  I know she recognized my voice and knows me as being someone familiar and I believe she still knows I'm her daughter.  After all, she told me she loves me twenty times today!  I think if I was in front of her she would be able to say my name.  At least I hope so.  

I felt close to mom this Easter because we got to spend some time together, uninterrupted.  This was a wonderful Easter gift and truly a miracle that Mom held the phone for that long.  That hasn’t happened in a very long time.  I needed her today and I felt like she needed me, too.   We got 50 minutes together, time that we both needed, and I’m happy.      

Blog 65: I Miss The Way It Used To Be

When I called for my mom, her caregiver woke her from a nap and handed her the phone.  Mom started crying when she heard my voice.   I asked her why she was crying and she told me she didn’t know.  But I could clearly sense that something was bothering her.  I told her I love her and I miss her and she said she loves me and misses me too.

Throughout our brief conversation my mom went in and out of crying.  I tried to cheer her by telling her that I will see her soon and that her great grandson can’t wait to come see her, too.  That made Mom giggle a little bit.  She just loves the little ones, and talking about them always seems to cheer her up.  

I named everyone’s names and told Mom we all love her very much, and I said I wish we could all hop on a bus and come see her and take her to the park.  She cried again.  I told Mom to be happy and I could hear her caregiver, who was helping Mom with the phone, tell her to not be sad.  Mom kept saying she’s not sad, but her crying indicated to me that she was.  I just can’t help but wonder what is on her mind.  I wish she could tell me.

I’ve noticed a pattern of behavior with my mom whenever she awakens suddenly.  She appears to be coherent right away, and it’s almost like she doesn’t have Alzheimer’s.  She sometimes says things that completely take me by surprise.  She’ll say a complete sentence, or she’ll mention someone’s name that she hasn’t said in a long time.  She usually seems more emotional and nurturing then, too. 

It’s so hard to describe, but I’m wondering if a person with Alzheimer’s has a section of their brain that is protected, and when they are in a deep sleep, this part of the brain is activated.  I’ve seen this type of behavior in my mom many times after she wakes from sleeping.  I wonder if she dreams the way we all do, and then when she wakes up, she almost feels and acts normal until she becomes fully awake, and the reality of Alzheimer’s comes back.  I tried to find some information about this online but couldn’t find anything. 

As far as my sisters…I called Kathy while she was at work the other day, because I knew that was the only way I could talk to her.  She usually doesn’t answer when I call her mobile phone.  I was surprised to hear how happy she was to hear my voice.  She commented on how long it’s been since we’ve talked and I told her she doesn’t answer when I call her.  I asked her if she was mad at me because she never calls.  She said she’s not mad at me, and she explained she has a lot going on in her life and her way of handling things is to keep to herself.  She said she doesn’t call anyone.   I told her I love her and I am always going to be there for her.  I expressed my sadness in not having my sisters to talk to during these difficult times with Mom’s illness.  I said we need each other now more than ever.  Kathy agreed with me, but still, I don’t see that things are going to change.  

I realized after talking to Kathy that the distance I feel from my sisters is probably due in part to the things they have going on in their own own lives.  It’s not about me.  It’s about them.  I need to stop taking it personally, letting my feelings get hurt, and losing sleep over it, even though I can't help but miss the way it used to be.