Blog 50: I'm Not Going To Hold My Breath

Last night was a very bad night for me.  I felt at my lowest point ever, and had an emotional breakdown on the phone with my daughter, after receiving yet another disturbing email from Renee.  My daughter, unfortunately, has seen me suffer much more than what any daughter should have to see her mother go through.  She took it upon herself to leave Renee a voice message, and give her a piece of her mind.  

Renee’s blows to me have been hitting me right where it hurts.  She is blaming me for moving away.  I already have so much guilt about that.  She is holding me responsible for every failed attempt she has made to do the right thing for Mom, every sleepless night she has had, all the anxiety she has had, every fight she has had with her husband, and so forth.  She even ridiculed me for seeking out an Alzheimer’s support group, saying that she is the one who needs to attend support meetings, not me. I told her that we all need to go for some counseling and support.  I also told her she has no idea what my life is like and how I have been hurting and feeling so alone here without the support and comfort of my sisters.  I need help to deal with that.

I have come to the realization that there probably won’t be any reconciliation with her while my Mom is still alive.  Talking to her and receiving those emails, where she cannot let go of her anger, just raises my blood pressure and causes me so much stress.  That is so sad.  I didn’t want this, and Mom would be so very hurt if she knew.  I tried to mend things.  I tried for Mom.  I tried for us.   I love all of my sisters very much, even Renee, but I do not like her at all right now.  She and I just cannot get along.  There comes a time when you just have to let go and accept that you've done all that you could.  Renee does not care about having a relationship with me.  I am not going to hold my breath that she will ever change her mind.  We've been down this road before.

Renee has a masters degree in counseling, but she, of all my sisters, the most educated one, does not know how to relate to her sisters.  She does not show compassion and understanding to others.  If it's there, you don't see it.  She should know better and know wherein the problems lie, and she should understand more about the feelings of the rest of us.  Instead Renee talks to me like a teacher reprimanding a school child.  I've told her that she uses that tone and it is very belittling.     

Unfortunately, Renee is the lifeline I need to my Mom.   She will continue to withhold information and not tell me what’s going on.  I have been kept in the dark for the past two years as to what medicines Mom is taking, what the doctors are saying, and about what’s going on in our mom’s daily life.  This is her way to control and punish.  And I have to accept that I will not know these things. 

I do know that my mom was released from the hospital yesterday and taken to a nursing rehab facility.  How long she will remain there is yet to be seen.  At one point I considered moving back to Iowa, temporarily, to care for Mom.  Renee isn’t letting that be a possibility any longer.  I asked Renee if we can have a family meeting to discuss this option with everyone.  She said she didn’t want to be any part of a family meeting. 

I’ve heard that God doesn’t give us more than we can handle.  I truly feel that my sisters and I have been put to the test.  We have been stretched and pulled and tugged at, to the point that we are hanging on by one thread.   That thread is our mom.  

I will be going to see her soon.  I'm hanging on for Mom.   She brought me into this world and I will never, ever leave her.  I will be there for her in whatever capacity I can.

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."

Blog 48: I Still Have Hope

My mom was taken to the hospital a few days ago.  She has become increasingly agitated and combative and they want to try different medications to calm her down before she leaves the assisted living center and goes to skilled nursing care.  She’s expected to stay there for at least a week.  Renee has already removed Mom's belongings from the assisted living center she was in.  She won't be going back there now. Renee said she’d keep me up to date with how Mom's doing, but she hasn’t been doing that, so I took it upon myself to call the hospital today.  It took awhile to get to the right department but I got through, and they let me talk to my mom.  She seemed ok, though her voice was somewhat slurred.  I’m sure it’s the new drugs kicking in.  She said she can’t find her shoes and then she said she had to go.  I could hear people talking close by and I think it was distracting her.  I told her I love her and she told me she loves me too. 

The communication with Renee has gone kind of sour.  I was afraid it would because it seems that since I opened the door she is using me as a sounding board and taking all of her frustrations out on me.  It’s like, she welcomed the opportunity to tell me exactly how she feels.  Even though I told her it is best that we not bring up the things that hurt us in the past, she finds every opportunity to bring up so many things that have frustrated her, and not just about me, but she is projecting it off on me.  

I’ll give an example.  Renee sent me an email the night before our mom was going to the hospital.  I emailed her back and I said that I knew she was getting pretty agitated and that I hope that the doctors can help her.  The next day I tried to call Renee because I thought that Mom was taken in by then, and she didn’t answer.  Instead she sent a text and this is how it went…

(Renee)  I don’t have time right now.  They r not taking mom today.  There is no bed.  I go back and forth on what’s best but I do know that this hospital has a good reputation and mom cannot be happy when she is this agitated.  She has struggled with the agitation since day one and the right medication could really help her. 

(Me)  Who suggested she go there?

(Renee)  THEY DID and it wasn’t a “suggestion”, it was a “we can’t help your mom when she is like this,”  so don’t even go there Lizzie.  I’m in no state to embrace anything but support.  U asked to know what was going on, and u know.  We r done for now. 

(Me)  Why are you mad at me and so defensive? I only asked a question.  I care.

(Renee)  Because that was a bullshit question and u know it.  Why the f..k would I suggest it. 

(Me)  Wow.  I’m sorry. I want mom to be happy, that’s all.

(Renee)  Yeah, wow, it’s called sleep deprivation and extreme uncontrollable worry and anxiety.  Well then you need to change your expectations bc I can guarantee you one thing, no one is “happy” with dementia.  Seriously?!  Would u be

(Me)  That’s not what I meant.  Of course.  Maybe happy is a poor choice of words.  Sorry.  None of us are happy now.  You act like you are the only one who is feeling the way you are.  I don’t want to be your target for your frustration and anger.  Call me when you feel like it.   You are the one who said mom can't be happy when she's agitated.  

(Renee)  We r done here.

Her emails have been much worse, full of condescending tones, and lots of anger.  She emphasizes her sentences using quotes, capital letters, bold lettering, and rows of exclamation marks and question marks.  It is so intimidating.  I just don’t know how or if I can be of any help to her.  The thing is, I am trying to help her.  I reached out to her.  I want to have all of my sisters in my life!  But, she doesn’t want any help.  She wants to do everything herself and make all the decisions herself and not include any of her sisters.  She is not open to suggestions or talking things over.  There is no discussing anything that she is not in favor of.  It’s her way or the highway and if you don’t agree, shut up and don’t say a word.  Then she takes it all out on us because she can’t do it all herself, and she questions the decisions she has made.   I think she's mad at herself, maybe questioning her decisions, and she's taking it out on me.

Then there’s Lynda, who has closed the doors of communication.  She didn’t respond to the email I sent her, and she has ignored my phone calls.  I left a message for her to please call me because I want to talk to her.  She hasn’t.  I don’t understand it, and the only thing I can come up with is that she wants to leave well enough alone.  She knows I have offered to come home to take care of mom, and that if I'm not allowed to, I have pushed to have her put in a nursing home in her hometown where she and most of Mom’s family live.  But if Mom came home, it would mean she would feel obligated to take a more active role in Mom’s life.  She likes things the way they are, with mom a three hour drive away.   Her comfort level is going to see Mom once every 6 weeks.  Everyone loves our mom and we are dealing with her illness in our own way and we know what we can handle and what we can’t. 

I just can’t help but feel that Renee has a lot to do with Lynda’s distance from me.  I’ve felt that all along.  Renee is throwing me under the bus.  She's making me look like a bad person because I moved away, because I wanted to come back to take care of Mom and she didn't think it was a good idea, because I didn't agree with so many things Renee did in selling Mom's house and disposing of most of her belongings, and so on. Lynda and I used to talk about everything regarding Mom.  Lynda has given in to Renee's demands.  It's easier that way.  She's been on the receiving end of Renee's wrath before, so she has shut down and given in.  We shouldn’t have to do that, we shouldn't have to take sides.  We don’t have to always agree, and we should accept and listen to each other and not hate one another for not thinking the same way.  Taking the not speaking to one another route is not going to benefit any of us, and certainly not Mom.  We are living proof of that.  If we would have been communicating all along, we wouldn't have all these issues.

In regards to Kathy and Annie, they both want Mom brought back to her hometown.  But Kathy doesn’t have the fight in her to deal with Renee, and Annie won’t even speak to Renee.

Renee is the one running this boat.  I’ve been the one trying to patch things up with all of my sisters and keep this boat from sinking.  I finally told Renee that I am not going to be the one to fix things with her and Annie.  I fixed what was wrong with me and Annie and it’s her job to fix what’s wrong with her and Annie.  I always try to be the one to make things better because I am the oldest, and I’ve always felt responsible in keeping everyone together as a family.  I won’t give up just yet.  I still have hope that my sisters and I can get a grip on what this stupid disease has done to our family.  Maybe my trip back home will help, maybe it won’t.  I do know that I am trying my best, being overly understanding, biting my tongue, letting Renee vent, without giving up who I am.  

Blog 47: Changes Coming Soon

Some progress has been made in the communication with my sister Renee, after sending her the article I posted in my last blog post.  She emailed me and I wrote her back and told her I want us to be able to move forward and put these things that troubled us in the past behind us for now.  They can be addressed at a later date if we need to talk about it.  Right now I think it’s important to focus on healing and moving forward, and when we feel that our emotions and our sister relationship is in a good, safe, healthy place, then we can talk about those things (if we need to, and I know we will).

We spoke on the phone and have continued with emails.  Some of which were not very positive as she wanted to discuss some issues from the past that only brought up those painful memories, but all in all, I think we are moving forward.  I had to bite my tongue a few times.  She said she appreciates me reaching out.   Hopefully, we are starting our next chapter, and it will be one of loving, caring, supportive sisters.  One thing I know for sure, our mom is loved so much, by each and every one of us.  That never was in doubt. 

So much has happened in the past couple of weeks that I can’t possibly go into all of the details.  But to put it simply…my mom’s money will be gone by the end of this year, and she needs to be moved out of her current facility to a nursing home that has an available certified Medicaid bed in a memory care unit.  Renee found one close to where she is now, and I asked her if I could make phone calls to try to find one closer to the rest of the family in Mom’s hometown.   I found that most places have waiting lists, if they even accept title 19 at all.  I believe that one can be found, but it is going to take more than me making phone calls.  Renee wants me to come back ASAP and help her with paperwork and placement.  Most likely, Mom will not be moved to her hometown, which makes me sad, because I know one of my sisters will not come around should this happen.    

In the past year, Mom has shown some decline in her memory and concentration.  She is often incontinent, and it can take her a half hour to brush her teeth and change her clothes.   The agitation has become worse, she walks much slower, and she is just slipping away.  

Nobody wants Mom to be moved to a skilled-care nursing home.  It’s scary, not knowing how she will adjust and what kind of care she will receive.  I offered to come back and take care of Mom for awhile, and Renee said if I did she would hand over guardianship to me, to which I said no.  I live in Arizona, I would have to bring Mom back here with me (she’d never handle the flight) and take her away from the family, or else sell my house and move there, and that’s not an option for me at this time.  I can’t possibly make these changes right now.  Plus, Mom’s house is gone, her furniture is gone, and now her money is gone.  My plan is not the same as it was last year when I offered to come back and be Mom’s caregiver.  Renee wouldn’t let me then.  I had predicted she would be willing to relinquish guardianship once it got to this point.  I don’t know how I can do it now, but I will find a way if she will help me.

The latest news is that I am going to fly back to Chicago and take my mom to my daughter’s apartment to care for her.   This isn't set in stone, but it is a real possibility.  Renee said Mom needs to be moved out of her current location by the end of the month, or shortly thereafter, and she wants me take Mom and see how it works out before she places her elsewhere.  She suggested I do it for at least a week.  I don’t know how long I will be there, I don’t know if it’s going to work out, I don’t know how Mom is going to handle the new environment, I don't know anything right now.  All I know is that I want to do whatever I am able to do for my Mom.   Renee is giving me this chance, and for once, I feel that my prayers have been heard.  It's not going to be the same as it would have been last year.  Things are different in many, many ways.  Mom's familiar things are gone.  It's going to be a challenge, but I'm going to do my best.     

Blog 46: Sharing an Important Message

This is a story written by a Facebook friend, JoAnne Chitwood.  It is not written by me, but it seemed like it was written for me.  I felt compelled to share it on my Facebook page and my blog, and to share it with my sisters.   My sisters and I have drifted apart, and, even though we are all suffering because of it, we can't seem to come to terms with how to fix the problems, because of our own hurt feelings.  I'm hoping that we can once again hear this message that we are smart enough to know, but need to be reminded of again, and put some true effort into making peace and being a real family again.  It's like I said before, though, people have to be willing to make changes and to want this.  I'm willing, I want it.  I hope they are, too.  I asked her permission to post it on my blog.  Here it is...

"I had a dream last night that felt as real as if I were wide awake. I was cross-country skiing in the mountains with my family. My brother was there, just ahead of me on the trail. Suddenly the snow around us turned to slush and a roaring flash flood began tearing away chunks of the mountain beneath our feet. We fought to keep our footing and scrambled for higher ground. I had gone back to get something I left in the trail, so was the last one in the line. My brother waited for me, risking his own life, and pulled me to a place of safety.

I woke up thankful that it was just a dream, but began thinking about family. My son, James, is studying criminal justice and is looking at trends in society and how those stem from how our families function. I believe it, too, from many years of dealing with family systems- my own and those of many other hurting people. I do believe that as goes the family, so goes society.

I’m not talking about specific configuration of family. I don’t care whom the family is made up of, we affect each other deeply. We may have a trigger event happen with a family member that pushes deep buttons for us and feel that it’s better that we cut off a relationship with that person. Granted, that may sometimes be the wisest choice we can make at the time, if that person is unsafe and won’t look at the issues. But it’s like amputation, we only do it if there is no other option.

God knows we all have our issues and what triggers us in the other person’s attitudes and actions is actually most often a mirror of our own unresolved “stuff.” This is a priceless gift. In healthy, open family systems, these “triggers” are addressed in an atmosphere of deep caring for each other, tolerance, empathy, and a willingness to be uncomfortable for awhile until you hear the other person’s honest viewpoint and understand where they are coming from.

Many studies have been done that demonstrate the very personal rewards for those with the courage to heal wounds instead of destroying the fabric of the family by closing off from each other. Those who choose healing in relationships have significantly less physical illness. Cancer thrives on bitterness and isolation (since those increase acidity in the body.) Migraines, anxiety, lowered resistance to colds and flu, heart disease, muscle aches, etc. can all be traced to unresolved issues of the heart.

Another great gift we give ourselves when we choose to be part of a healing, open family system is that of personal momentum. Resistance is a force of nature. The tendency to homeostasis is like the law of gravity. Any time we are moving in a direction of growth and creativity and following our dreams, resistance will come against us to hold us in homeostasis. All artists know this. We have to push against the resistance to create something new and wonderful, even when that new and wonderful thing is our own growth and development.

One of the most effective ways that resistance keeps us from realizing our dreams is within the family, in relationships. The most effective resistance comes from avoidance of relational issues. It may seem that we are taking the path of least resistance when we avoid dealing with issues, but it is a choice that actually increases resistance to personal growth and healing and self-actualization in ourselves.

In other words, we all get there together, or we each suffer. Anyone who has ever experienced a rift in their family system knows what I’m talking about. We can choose to do the work individually, even if others in the family won’t, but we will never experience what we could have if we had all pulled together.

It’s true in the family system and it’s true in the larger family system that is our country and our world. Do you want to see growth and health in our country? Go make peace with your sister. It starts with each of us.

I am proud of the decisions I have seen my family members make, over and over, even when it is super difficult, for healing of wounds and moving closer together rather than making the choice of fear and distance and isolation. I will continue to fight for that, to pray for that, and to choose it for myself."

By JoAnne Chitwood