Blog 30: One Disease, A Million Fragments

Mom was pulled from her home and taken away by one of my sisters, who gained control of everything.  I lost my rights as a daughter the day Renee got control.  My other three sisters lost their rights, too.  It’s so sad, what happened to our family.  Alzheimer’s changed all of us.  We were no longer the same.  Each and every one of us broke apart.  We were no longer considered in decisions regarding Mom.  Only one person was making all of the decisions, with no consideration for the rest of us, and that caused the separation of our sisterhood.  One disease, a million fragments.  Could we put us all together again?  

Mom was very scared when she was taken and secretively admitted to the hospital.  It was a very emotional time for her and she did lots of crying.  Mom had to sit through a hearing with a magistrate, alone, because Renee left her in the hospital for two and a half weeks and went on vacation.  She told the hospital not to release her until she returned.  When she was released, Renee picked her up and brought her to live with her in the suburbs of Chicago.  The judge said she couldn’t go home.  Renee got her wish, but she didn’t want to bring her home, she wanted her placed in a nursing home.  She kept Mom with her until she found one.  She promised all of us that she would not place mom in the Chicago suburbs, where she lives, because it is three hours away from her hometown, where three of her five daughters lived, and most of her grandchildren and great grandchildren lived.  She said she knew how important it was for Mom to see them and for them to see her and she wouldn’t take her away like that.  Everyone was worried she would not keep her word.  And they were right to worry. 

There was so much hurt and bitterness towards my sister for what she had done.  I didn’t even want to see her or go to her house anymore.  We used to be close, but we were separated by our differences.   I didn’t understand why she did what she did and how she didn’t even care how anyone else felt about it.  Our feelings were not considered.  We were left to feel helpless and ignored.

We always promised Mom and each other that we would never put her in a nursing home.  We said that she took care of us and would do anything for us, so we would do anything for her.  She has five daughters, and it’s not like there weren’t any of us who were willing or able to care for her.  Mom feared going into a home and she often said we just wanted to get rid of her and put her in a nursing home.  We promised her we would not.  Renee seemed to have forgotten about all of that. 

We had discussed with each other that the only time we would consider placing Mom is when she can no longer walk, dress herself, feed herself, go to the bathroom on her own, and when she no longer knew us.  That was the only time we would consider it.  We made that promise to each other.  Mom was still able to do all of those things.

Mom lived with Renee for six months.  My sister Lynda said that it was working out and she was going to stay indefinitely.  I thought maybe Renee realized Mom wasn’t ready to be moved to a nursing home, but I found out later, things were not working out with Mom there, and she was getting everything in order for her to go to a nursing home.  Renee and Mom always had a strained relationship, it wasn't any different now.

Renee had taken Mom to a new doctor there and had another evaluation done.  It was determined that our mom had a combination of things...vascular dementia, probably brought on by high blood pressure and cholesterol, with some alzheimer's, and possibly even lewy body disease.  It's been a year and a half since I've heard anything new and to this day I don't see any signs of lewy body disease.  Mom does not have nightmares or hallucinations and she doesn't show any parkinson type symptoms.  I know that diagnosis can change as time goes on, and I do not know if there's new information, because Renee doesn't share that with me. 

Mom does have sleep apnea, even though she is very thin, and that could have contributed to the dementia.  My sister Lynda always wanted Mom to go in for a sleep study but Mom refused.  Lynda works in the field and she feels very guilty and responsible for not making Mom get help for it years ago, when she first noticed she had it.  Hindsight is always 20/20.  None of us ever thought about dementia or anything like that, ever before.  It's not Lynda's fault, it's not anybody's fault our mom got this disease.  I remember seeing Mom breathe like that for the first time.  I was living with her and caring for her, and I walked into her room to check on her.  She wasn't breathing and I thought she passed away!  I was so very scared.  I looked at her chest and saw no movement.  I stood there frozen, just staring, waiting for her to breathe.  After a minute, she drew in a big breath.  I started noticing her breathing pattern when she was sleeping.  She would breathe normally and then stop, and after several seconds she'd start breathing again.  It was scary.  I don't know if that caused the dementia, but according to Lynda, it probably was a contributing factor.  

When I called to talk to my mom while she was living with Renee I was often not able to talk to her.  If Renee wasn’t there, a caregiver was with mom, and Renee instructed the caregiver to not answer the phone.  If Renee's kids were home with my mom, they were told not to answer the phone.  It seemed the only time I could talk to Mom was when Renee was available to monitor and listen in on the phone conversations. 

Mom would try to talk secretively, and she would tell me that Renee was listening in.  She said she was afraid of her. She told me she had something to tell me but she couldn’t do it over the phone, and I was not able to just stop by since I lived half way across the country.   Mom would go into another room to talk, but Renee was probably listening in on another line.  Mom told me she wanted to go home.  I don’t know what Renee was so worried about.  I was not going to say anything to upset my mom.  I was happy that she was with one of her daughters instead of a nursing home, even though I didn’t want her with Renee.  I could never have any privacy with my mom.  I did go back to see her during this period of time and I took her out of my sister's house for the afternoon.  We had a long talk and all Mom would say was that she wanted to go home.  She was worried about her plants and her home getting broke into.  I assured her my other sisters were taking care of her home for her.

After six months, I received a text message from Kathy.  She told me Renee was going to be placing Mom in a nursing home next week and that Mom won’t live past Easter if she puts her there.  She was very upset and wanted me to do something to stop her.  I had no idea the time had come for her placement.  Nobody told me anything prior to that text.

I quickly responded and offered to come back to my hometown and live with Mom again and care for her. My boyfriend was willing to come with me and help with her care. I said I would do it for three months and possibly six.  We can reevaluate her condition and see how things go.  I strongly felt that Mom didn’t need to be placed yet.  I offered to do this to help Mom, first and foremost, and to save money, and lastly, to bring our family together again.  The nursing home she had selected costs $6,400 a month.  Mom doesn’t have that much money and she would run out, and then what?  Mom would have to go to a state run facility.  I didn’t want to see that happen.  So I offered to care for mom in her home.  But Renee refused.

Renee said she already did all the paperwork and leg work to get Mom placed.  She didn’t want to let me care for her at that point.  But where was her communication during this time, why didn't she let me know?  Once again, she controlled Mom’s future.  She placed her in a nursing home on April 11, 2011, only a couple of miles away from her house, which she promised all of us she would not do.  She was three hours away from most of her family, which created a hardship for most of them to come see her.

Even after Mom was placed in this home, I tried for several months to get Renee to allow me to come home and take care of Mom.  Renee was putting my mom’s house up for sale and my sisters were freaking out.  I wrote up a plan and sent it to Renee and all of my sisters.  Everyone else was in agreement with me doing this, but the one who wouldn’t agree was the only one who had the power.  I met with Renee and gave her my plan, but she got mad at me for even bringing it up.  She said it wasn’t good to move Mom again.  She said it would be a cruel thing to do to her.  I didn’t see it as cruel to bring Mom back to her home, when that’s all she kept saying was that she wanted to go home.   Renee moved Mom three times in the past six months.  She took her from her home, placed her in a mental ward, moved her to her house, and then put her in a nursing home.  She had made her decision and the rest of us needed to just deal with it.  She put Mom’s house on the market.

I felt that Renee had a personal vendetta against me, and therefore, she was not going to let me have Mom.   She knows I am a good person, responsible, caring, and nurturing.  I raised three wonderful kids who are now on their own, with their own families and successful careers, and I had the time, since I wasn’t working.  She knows I lived with Mom for six months and cared for her.  Now she cared for her for six months, too.  I felt that she did it, just so she could say she did what I did, and she didn’t want me to have her longer than she did.  I know that sounds totally foolish, but Renee would keep records of each and every time she came to visit mom and how long she stayed with her, etc.  I felt that Mom was being sent to a nursing home, simply because Renee didn’t want me to have her, when there was no good reason why not, other than the fact that she didn’t want to lose her control, or see me have success with caring for mom.  I don’t know if I would have success, but I was willing to try because my mom was worth the effort.

I even told Renee she could keep the control of everything.  I said I would live with Mom in her home, in an apartment, wherever…just so she didn’t have to be in a nursing home with strangers.  

Mom was so sad and scared.  Renee continued to control us by not allowing us to talk to our mom on the phone.  I will talk about this in my next post.