Saturday, April 30, 2011

More: From bad to worse

Mom told one of her doctors last Sunday that I had thrown her down the stairs. Completely untrue, but still an allegation of abuse. He charted it, now the State of Washington is involved through Adult Protective Services. What this means for me is that I not allowed to be in a room alone with her. I can only see her with another adult present or in an open public space at the rehab facility.

It will also most likely mean that she will never get to go back to her apartment as I am her only caregiver. She would never allow a stranger into her home to care for her because she is just too paranoid. Her care options have been dramatically narrowed by her actions...not that she will ever see it that way.

This news is both a relief and devastating at the same time. The relief comes in knowing that others will now be charge of her fate. The devastation part is that she so wants to go back to her apartment, to her furniture, her locked up foot chests filled with what she sees as her treasure.

I talked about all this in therapy yesterday. It helps a bit to talk about all of this with another adult. My therapist made the point that I had chosen to take care of myself, my bipolar diagnosis, and be in charge of my own health and life. Mom, on the other hand, has always fought any effort to ameliorate her health problems. Her efforts have gone into trying to be in absolute control of everyone around her. She is more out of control of her fate than ever, but I doubt anyone can make sense of all of this for her. Her doctors now believe she has some mild form of dementia that comes and goes....kind of like a flickering light bulb.

I am grieving the downward spiral of her life. I am grieving how she has fought everyone in the last month who is trying to help her. She focuses just on what she wants and cannot see the broader horizon. Now by her own actions, her horizon is narrower than it has ever been.

My therapist pointed out that she spent 60 years with my Dad, who spent those same 60 years trying to do whatever he could to help her be happy, despite her paranoia and impulsive nature. She has traveled a bit, always had beautiful clothes, homes or apartments, been cared for by me for four years, never really had to deal with much in the way of health problems until her late 80' a pretty nice if somewhat small life. But she chose to be manipulative her entire life...and has always been pretty unhappy. Now she has painted herself into a pretty small corner that will make her more unhappy than she has ever been in her life.

I wish my Dad was alive to help me with her. He always found a strategy to work around her difficult personality and peculiar thinking patterns. I know he must have prayed for 60 years for strength and guidance. I do the same now, but find myself exhausted, in despair, and completely overwhelmed by the complexity of the current situation.

Poetry has always been a source of strength and comfort to me. I found this stanza from Maya Angelou's poem, "Still I Rise" and it seems to fit for me right now.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I'll rise.

Maya Angelou

Wednesday, April 27, 2011

Day 28

Mom is again agitated about going home. I had a conversation with one of the doctors at the rehab facility today and that seems less and less likely. She probably could go into assisted living or an adult family home.

I know that an adult family home will not work at all. She is so paranoid it would just be impossible. She would also not get along with others and one thing would lead to another ...and then my phone would ring. Assisted living is not going to be an easy route either. She has it in her head that she is going home and wants it to be sooner rather than later.

Today, she told me that she was going to take a cab home. She has no keys, no purse, no money...but I wished her well. I am going to schedule another Care Conference because I just cannot be the only one trying to get her to see her new reality.

I am exhausted with the whole situation, but here we are...on Day 28. The doctor said that she would be in the rehab facility two to four more weeks. Mom is going to blow her stack on that bit of news. Add to this the information that she has a mild form of dementia...and you have a potent mix of troubled elements.

No wonder I am tired....this is a lot to manage. Mom is doing very little to cooperate and I am a bit paralyzed as to what I should do next. Maybe I should look at assisted living facilities...maybe I should wait until a get a call back from DSHS about her Medicare and Medicaid status....maybe I should just go take a nap....

Day 28...onto Day 29

Monday, April 25, 2011

The same

Every day is the same. Mom calls me at some point and starts giving me a hard time about how I need to get down to the rehab facility/nursing home and take her back to her apartment. Her version of things has her able to walk unassisted, go to the bathroom without help, basically do everything she needs to do to live alone again. These calls are always difficult because I am now the bad guy, the person who is standing in her way. I try to explain that it is up to the doctors and the physical therapists to determine if she is capable of being on her own again. I find it really doubtful...but she is determined to get back to her apartment.

My challenge is not to let her take me down with her on this particular manipulative journey she is on. It is exhausting to have to been the one she is verbally abusing. I feel bad that she is having such a hard time ...but she has also not taken full advantage of this opportunity to rehab her hip and learn some new safety techniques.

Tomorrow, it will be the same again...the phone will ring and the conversation will repeat itself all over again. Just thinking about it makes me tired and full of despair.

Sunday, April 24, 2011

Easter Sunday...go down swinging, Mom

Exhale, inhale, exhale again....inhale again...repeat until I feel calm again. Today was a tough day with Mom. She called this morning before I left for church, but I just did not have the strength to deal with her. Every call has been the same for a month.

"The doctor says I can go home. Come get me today, tonight, right now, so that I can sleep in my own bed. Bring my purse, bring my checkbook, bring cab fare so I can go HOME. I want to go HOME....I hate it here, the food is terrible..all I do is sit in a wheelchair....they are taking my money...get me out of here NOW!"

It is a variation on this theme over and over again. I know that the doctor has not released her. I know that she is bored and anxious. I know that she is more scared than she has ever been before. I know that is she more manipulative than she has ever been before. She is not in control now and she wants to get back in control and she will say and do almost anything to make that happen.

I tears at my flesh to see Mom like this, but I cannot physically or emotionally take care of her anymore. We have crossed into a new frontier of nursing assistants to take her to the bathroom, dress her, get her into her wheelchair...take her to her physical and occupational therapy.

I have no idea if she will ever be able to go back to her apartment. It seems unlikely from everything I have been told so far. She needs help going to the bathroom, and getting dressed. She is a high fall risk because of her hip and her age...and her instability. I have talked to her physical therapist and her occupational therapist...both say that she can never be alone again.

All I know is that I can never take on her care again. I have done it for four years and I just don't have it in me to take on anymore. Of course, Mom will not understand need to have my own life, my own family, my own breathing space. As a narcissist, she will only she herself and her own needs. She has made me the enemy now, but she will become anything she needs to become to get her way.

To find her ticket back to her apartment...where she was miserable before...telling me how blue she was, how lonely, how lost. There is no good solution here. She will fight me every step of the way until she is finally gone. This resilience, this stubbornness, this is her legacy to me. Go down swinging....Mom, go down swinging.

Saturday, April 16, 2011

Phone calls

Mom calls me several times a day to tell me to come get her. Today she informed me that the Doctor said she could leave as long as I gave my permission. I checked with her nurse and found out that no such order has been put in her chart by her doctor. I asked the woman at the nurses desk to stop giving her the phone because I need a break for this behavior. I also asked them to leave a note for the Doctor on her chart. I need to talk with him and get a better idea of what is happening with her congestive heart failure and the pneumonia.

Friday with Mom

My nephew Danny visited Mom. It was great that he could come with me after we had breakfast. He was so good with her...talking, holding her hand, helping me get her dressed for lunch. It was amazing to see what a wonderful man he has become. His visit made Mom's day. She introduced him to all the ladies at her lunch table. Danny told her he would come back again to visit. As we left we waved to her through the window as we walked down the path to the street.

We talked a lot afterward about Mom, brother, his Danny is doing. It was so great to see him. I would be friends with him even if he wasn't my nephew....he is just that cool.

I know it made Mom's day pretty happy....she talks about him all the time...and has been asking me all kinds of questions about his life. I managed to arrange one of the things she has been wanting....time with her grandson.

While we were there I talked with the woman who has been working with Mom on her physical therapy. She told me that Mom is really funny and gave me an example of her humor. She told this woman "you don't have to be crazy to be here, but it helps". Classic humor from Mom!

Monday, April 11, 2011

From bad to worse

Mom has been difficult all day. She was pretty crabby when I dropped by to sit with her at breakfast this morning. Mark sent me a text telling me that she asked him to take her home. He asked her to come to her room to have a conversation in private and she refused to go. He turned and walked out of the facility. I got a call from her on my cell this afternoon. She was demanding that I come get her and take her home. I refused and told her she needed to be where she was...that it wasn't safe for her to come home.

When I got to the facility this evening, she was sitting by the elevators with her satchel in her lap. When she saw me she waved and smiled. She told me that I had to take her home. I tried to reason with her...I tried distracting her by asking if she had had her hair shampooed and cut today. Nothing worked.

I had a conversation with two of the employees...her nurse and the care coordinator. They told me that she was refusing to eat and would not take her medication. Their big concern was that refusing the antibiotics would put her in a dangerous position with the increased coughing and the pneumonia. I pleaded with her to eat something, take her antibiotics and then get some sleep. She refused again.

While I was talking to her doctor on the phone, she managed to move over to the wall in her wheelchair, get up and then stand holding onto the railing. Three employees where standing around her for safety. The doctor and I agreed that she needed to stay put and that the best strategy was just to wait her out in hopes that she would eventually get tired and hungry.

The nurses asked me what to do about the antibiotics. I told them not to force them on her...just to let her be. She was begging me to take her to her home while I walked down the hall to the exit. It was one of the worst days I have ever had with Mom. I can only hope that tomorrow she is in a better frame of mind.

I know that I am going to stay away for a day and see if that doesn't help a bit. I think it may cause her to think about going back to her place when she sees me. Looking at her tonight, trying to reason with heart was just breaking. Why does she have to make everything so hard for herself and for those who are closest to her? I am sure I will never know.

Sunday, April 10, 2011

Day 11

Today is Day 11 in the rehab facility. Mom has been pretty tired all weekend. She started it off with a fall in her room on Friday afternoon.

Mom slide off the toilet seat in her room last Friday because she refused to call for an aid to help her. When I got there she was sitting in a chair by the nurse's station. She was totally wiped out. I sat with her and rubbed her back. They were preparing to take x-rays and blood tests sometime during the evening. They found that she had not injured or broken anything. They did find that she had some kind of spot on her they are treating her for pneumonia.

When Mom fell, she was trying to prove she could go to the bathroom on her own so she can go home by next Thursday. I don't see that happening but I try to keep encouraging her to work with her physical therapist. The main problem is she had so little strength. Her hands have arthritis, her feet give her trouble with neurapathy, and she has trouble maneuvering.

I was at the facility a lot over the weekend. I try to encourage Mom to eat, but nothing really seems to taste good to her. She ate the most at lunch today when she ate her chicken fried steak, half her mashed potatoes, and a few bits of broccoli. Tonight she just picked at her chicken caesar salad and banana cake.

She says that her stomach hurts all the time. That is probably from the antiobiotics that she is taking. She complains that she is taking too many pills. I asked for a listing of everything she is taking, but my request will have to go through medical records department at the facility.

I also pitched a mini fit there yesterday trying to get her a toilet seat riser that elevates the seat. She is used to using one at home. It helps her get to the toilet without having to bend down too far. I got a bit of a bureaucratic run around being shuffled from person to person yesterday. One woman said she knew that Mom had fallen because she did not have the riser, but that the physical therapist would have to get an ok for one. I just got very firm and said that I knew the facility would not want my Mom to fall again and that I thought this simple item would help her a lot. Voila....there is was this afternoon when I got to Mom's room.

I am going in early tomorrow morning so I can catch her doctor. I want to understand more of what we are dealing with and get a realistic evaluation of her ability to be on her own or not...then I can move ahead and start to plan for one of these scenarios.

I am physically and emotionally exhausted. Mom is pretty down and not feeling well. It is hard to see her in this situation because she does not do well when she is not in control. I am just putting one foot in front of the other while trying to be her advocate.

Saturday, April 2, 2011


It turns out that the hospital and the surgery were the easy part of this week. Once I had Mom moved to a rehabilitation facility, all hell broke loose. Mom seemed fine when I was with her on Thursday afternoon. She rested in bed while I put all her clothes away. She ate some lunch and I signed a bunch of papers. She got agitated when she was asked to sign some papers and it basically went downhill from there. I finally left the facility when she began to beg me to take her home.

She ended up calling me all afternoon with the same plea.."take me home....I don't want to be here". She finally packed all her clothes, put everything on her over bed table and rolled it as far as she could until the staff got her into a wheelchair. She then proceeded to move to the lobby where she sat all afternoon and into the evening demanding to be taken home. The staff kept calling me and then putting her on the phone so she could beg directly. They finally called to say that she had called the police and told them that she was being held against her will. The staff asked that I come down to talk to the police.

I sat in my car in front of the facility waiting for the police to arrive for about a half hour. I arranged for my best friend to come over and be with me. I just did not want to handle this alone. She finally arrived, the police finally arrived....and the talking began. The officers did a great job...really trying to reason with her that she needed to be there to get stronger after her hip surgery. At one point the nurse asked if I would help hold Mom down so they could give her a shot of Atavan. I told her I could not do that ....she would see that as a total betrayal. We called my brother so the officer and Mom could both talk to him. After they talked to my brother, I talked to him. He felt Mom was upset to be in the same facility where Dad had died in 2007. I told him that was a complete smokescreen. Mom would say anything to manipulate people into giving in to her. I knew it was a complete waste of time to try and reason with her, but I let the process play out. There is no reasoning with someone who has both paranoid personality disorder and borderline personality disorder. Throw a little dementia in there and you have a very toxic stew.

I finally left because I knew there was nothing else I could do. The officers somehow got her to her room and kept talking to her. I don't know if they ever gave her the shot.

Since Thursday I have checked on her each day via phone. She was with a staff member all day on Friday because she tried to leave the facility. She was pouring over the yellow pages...probably trying to find a moving company to take her back to Arizona. Today she took her vitamins and her pain pill and had 8 hours sleep last night. Maybe they do have her on Atavan. All I know is that I can't take care of her anymore.