Our last go round

I took Mom to breakfast at the International House of Pancakes this morning before her appointment with the doctor. I wanted her to have a good breakfast before we went to her appointment because I had a feeling we were going to be there awhile. When we were sitting in the Doctor's office Mom looked and me and said 'This will be our last go round". I looked at her and said "Well, then, let's make it a doozy!"

The Doctor at the clinic was great with Mom...a woman who understood Mother's and was both clinically good and emotionally present. Mom had been concerned about a lump in her left breast. That was just one of the concerns...her breathing is labored, her blood sugar was really high, and the edema in her legs worse by the day.

The doctor sent us off to get blood tests done and an EKG. Once that was all done we went back to the Doctor's office and were told to go to another clinic to get a mammogram. Once we arrived at the second clinic, there was the usual flurry of papers to read and sign. We were then told that Mom would be having a mammogram and an ultrasound. Once those were completed, the Doctor called the first Doctor and they agreed that a biopsy would be done immediately.

By this time is was 1:30pm and we had been at this since 10am. Mom didn't complain, even though she had to keep taking off her shirt,sweater and coat repeatedly. Once the biopsy was done, we went back to the first clinic and were directed across the hall to get an X-Ray of Mom's chest. When that was done we went back and talked to the Doctor. She prescribed Lasix to deal with the edema and Metformin to deal with the high blood sugar.

She told me that Mom's blood work looked pretty good, as did her EKG. She is really more concerned about the labored breathing and the wheezing. I won't know until next week, but I think the concern is that the cancerous lump may have metastasized to her chest. The Doctor agreed that she had the classic symptoms of congestive heart failure. Next Friday we go back for an echo cardiogram so the Doctor can see what is going on inside Mom's heart.

We left the clinic around 3:00pm only to get into a rainstorm and a huge backup on the freeway. I took Mom home, helped her undress and made her some dinner. I went to the grocery store to do her shopping and to the drugstore to get her medications. I took everything up to her apartment, unpacked and put the groceries away, and made notes for Mom to remind her to take her medication.

I helped her into bed. She wondered aloud what she would have done without me today. True, it was a long day for us both, but she was easy to handle all day. In a strange way, it was a good day to be with her. It did remind me of the rounds of tests I took Dad to at the same clinic. I wonder if Mom will die quickly just like Dad did....just slip away and be gone.

Everyone loves a parade!

I took Mom to the Hi-Yu Seafair parade in West Seattle today. It took some doing, as her apartment is in the blocked off area. I managed to find a place in a lot two blocks away. I took her chair and set out to pick her up. Once she put on her shoes and hat she was ready to go. I got her back to the car and helped her slowly transfer from the chair to the front seat of the car.

I drove the back streets to find a place that would be relatively close to the parade route and to the spot that Pamela and Haven were waiting for our arrival. It took some doubling back and around, but I finally found a shady parking place. Again, I helped Mom transfer from the car to the chair. We were off! The problem I noticed right away was the absence of handicapped curbs on the corners. I had to lift the chair and then slowly steady it as I put Mom down on the street. We covered six blocks this way and finally found Pamela and Haven.

We all watched the clowns and the marching bands and those silly Seafair Pirates and Clowns. There were politicians marching, drill teams and floats drifting by. Mom seemed to have a good time just being out and seeing some new sights. Haven did great will the load explosions from the Seafair Pirates and generally seemed to enjoy her first parade. At the end of the parade, Pamela and Haven took off for the house. Mom and I headed back to the car but decided to stop at Mcdonalds for some lunch. We got back to the car and did the slow transfer again.

Getting Mom back to her apartment was again a bit of a challenge. I found one side street nearby where I could legally park. The big barrier was the large rocks that made up the parking strip. Mom was worried and not sure she could navigate them. I held her hands and told her that she could do it. She finally made it to the level sidewalk and sat down in her transport chair. I rolled her up the street and got her safely to her building, into the elevator and back to her apartment. Whew....quite the adventure!

No Doctors!

I asked Mom recently if she wanted to go to the doctor. She said "NO DOCTORS"!!! She also refused to consider going into a nursing home where her needs could be taken care of 24 hours a day 7 days a week.

Mom is in a new stage. She sleeps almost all the time. She says her legs are weak. She seems to have little or no ability to prepare food. I have been going over once or twice a day to heat up food, prepare salads, and do laundry and dishes. The edema in her legs is worse. She has a cough. It feels like she is less and less present.

Watching this is hard for me. I try to stay focused on what it is that I can do to help her or improve her day. Sometimes just preparing a meal for her helps. Sometimes vacuuming the apartment makes her feel better. I straighten out her bed clothes and try to make sure that her pillows are stacked up. Tonight I had to convince her to change into her nightgown and get into bed. She just laid there all curled up.

I will go back tomorrow morning to make her breakfast and try to get her comfortable for the day.

Forgetting

This morning I went over to Mom's like I have for many Friday mornings. I fixed us breakfast and set it out for us. Mom had one of her bills out and we talked about that for a bit. She wanted to pay with a money order, but I told her that she was going to use a check. I made the check out and gave it to her to sign. She looked at me and asked me what her last name was....I looked at her and told her her last name and how to spell it. As I was doing this I was thinking "ok...so now we are here...she is really starting to forget things."

After breakfast I got her to the car and then to the post office. We mailed her bill and then drove to the grocery store. She told me what she wanted and then sat in the car while I went into the store. She can no longer navigate the power carts. I got back with her groceries and then drove us back to her apartment. Since there was a local festival going on right up the street I had Mom stay in the car while I took her groceries upstairs.

I loaded her into the transport chair and pushed her all through the fair. She seemed to enjoy that quite a bit. Afterwards, I took her home, made her lunch and then told her I would be back for breakfast on Sunday.

As I walked down the hall to the elevator all I could think was "How will her memory loss begin to make a serious situation even more difficult for her and for me." Time will tell.

All fall down

I got a panicked call from Mom yesterday afternoon while I was at work. She had fallen and could not get up. I packed up my stuff and made it to her apartment in record time. I had called her apartment manager before I took off to let him know about the situation. I wasn't sure if she was alright, had broken something else, damaged the hip she just had surgery on....or what was going on. It occurred to me that I might have to have her hospitalized again.

Her manager met me at the front door and we both went up to her apartment. When I opened the door she was sitting with her back propped up against her red chair. She told us that she had scooted across the floor after she fell. It seems that she toppled over on her upholstered bench when she was trying to put on her socks. She had hit her head against the wall, knocked over a brass lamp and the digital tuner on the television. We lifted her up to her chair and began asking her questions about how she was feeling now. Her apartment manager left and I began assessing the situation more closely.

I made Mom some food because her eating habits have begun to deteriorate. Once I got some food and coffee in her I put in a load of laundry. I took out the recycling and the trash. I made sure she had something to eat for dinner.

I left after that and told her that I would call her later. The phone rang at my house around 8:30pm. It was Mom. She said she had fallen again. I went over and found her laying in bed with the sheets and blanket pulled up to her chin. She told me that she had fallen against a wall as she left the bathroom. She told me that her upper left shoulder blade area hurt from falling into the wall. I wrapped an ice bag in a kitchen towel and put it underneath her.

Again, I asked if she had eaten and the answer was "No". I made her a plate of cantaloupe, ham slices and macaroni salad. I actually ended up feeding her. She was so wiped out she couldn't manage it herself. She mostly ate the cantaloupe and ate a little bit of the other items. I got her to drink a little water and take a body and back aspirin.

I tucked her in bed, kissed her goodnight and left about 10:30pm after cleaning up the kitchen and folding her clothes and towels. I put together her breakfast before I left for home. It was a long day.

Tonight I went over and made her dinner and helped her with her checkbook and some bills. I told Mom that I am going to need to take over her finances. She is not capable of understanding any of that anymore. She made a mean and paranoid comment about "I guess I will have to trust you:" I told her that I would use all the money for her. She lamented the fact that there won't be any left for my brother and I. I acknowledged that was the case. I told her she could give us some of the money if she wanted to do that. I told her to think about it and that we would talk more later.

So...visiting Mom is now almost a daily occurance. She seems weaker, more confused, and generally unable to take care of herself. She is still adamant...she wants to remain in her apartment. I don't have the strength to fight her.

Breathe in, Breathe out

I found Mom fast asleep in her chair this morning when I arrived to make her breakfast, clean her apartment and do her grocery shopping. She had been up since 5:30am getting dressed and having something to eat. She sleeps a lot during the day now because she is up at least five times a night going to the bathroom. She is technically incontinent, but it still able to manage it with night time pants....or adult diapers.

It took me a while to rouse her, but she finally came to and we started our morning conversation. I fixed her a half of a grapefruit, bacon, made some fresh coffee and another piece of toast with jam. I made myself the other half of the grapefruit, a half of a slice of toast with jam, cream of wheat, a slice of bacon and a cup of coffee. We just sat eating in silence. Mom seemed to revive a bit after eating this second breakfast. Her blood sugar must have been on the low side.

We discussed what she would need at the store and decided on a few things, as I had done a big shopping trip last week. Before I left, I bleached her plastic toilet seat that allows her to sit down on the toilet without having to sit down too far. This is particularly necessary now with her hip repair. I did the vacuuming and the dishes and headed out for the grocery store.

When I got back from the store, Mom was sound asleep again. I put the groceries away and made her a light lunch: a fried chicken drumstick, a serving of macaroni salad a glass of water and a chocolate stripped shortbread cookie. She says her mouth is dry all the time. I try to get her to drink water whenever I can because I am sure Mom is dehydrated.

She talked again about how hard it was for her to breathe in the morning. She believes it is because of some kind of central heating system in the building. In truth every apartment has a discreet electric heating unit. I tried to explain to Mom how congestive heart failure affects the heart and lungs. She nods and then forgets what I have said. We repeat this conversation a lot these days.

As I watch Mom failing more and more each day, I feel a certain protectiveness and love for her that I have never really been able to sustain in my life. She no longer has the energy to fight with me, or criticize my life or choices. There is a softness about her now that I have never seen before. I wonder how much longer she will have to suffer like this...and wish that she can have a few more good days, or months before she dies.

Another new plateau

Mom is still struggling along these days. Some days are definitely better than others. She seems to sleep more and more all the time. I know this is a side effect of congestive heart failure...but knowing that doesn't make watching her slow decline any easier.

She is in a pretty depressed mood a lot of the time, or is incredibly anxious about something that keeps her awake all night. It is usually a bill she has received in the mail for her care while in the rehab facility. More and more she needs me to explain her bills, and her bank statement. She cannot seem to remember the things we did at the bank. No matter how many times I go over it with her, she cannot absorb the information.

She told me that she had gone "bananas" being in the rehab facility. I laughed and told her that in fact she had been a little "bananas" before she was a patient there. She laughed too.

Mom and I had a good talk the other night...but part of it was really hard. She told me that she knew I would be relieved when she died. Yes, part of me will be relieved of all the responsibility of looking after her, but the other part of me will really miss her. For all her foibles and idiosyncrasies, she is my Mom and I love her. Yes, she always does everything the hard way which invariably requires more time and energy on my part. Yes, there are many stories I could tell that would show her flaws and failings as a parent. But there are many other stories that show her concern for me, or her unflagging ability to love me.

I don't know where we are on the final leg of this journey, but I do know that I will be by her side until there is nothing else I can do for my Mom.

Feeling safe

Mom has been in her apartment since she broke out of the nursing facility on May 5, 2011. She does not seem to be doing well...but manages to teeter through each day.

Yesterday I went over in the morning and made her a good breakfast: biscuits and gravy, a fried egg, some cantaloupe and coffee. She ate everything and really seemed to enjoy her meal. I don't think she does as well when I am not there to cook for her and serve her.

Today, I stopped by after work and found that Mom was already in bed asleep at 4:30pm. The sink was full of dishes and the garbage needed to be taken out. I took care of all the housekeeping chores and then tried to rouse Mom. She was pretty asleep, but eventually came to enough to have a little water, two aspirins, a cup of coffee and a cookie.

I told her that she wasn't looking that good. She seemed dehydrated and lethargic. I told her I was concerned and that we might need to go to the hospital. She was adamant...no hospitals, no doctors. It is hard to see her dying by inches, but that is what she seems to want to do. When I asked her about her resistance she simply said that she feels safe in her apartment. I guess it is my job to let her live out her life in exactly the manner of her choosing. It is not easy for me to see her story unfolding in this way but I am doing my best to help her get by until she either passes away or something happens like another fall that would send her back to the hospital.

A time of diminishing returns

I have spent the last week watching Mom fight a battle of diminishing returns. I am not sure how sustainable her current situation is ....as I know I cannot keep taking care of her as her needs begin to increase. I cannot handle her physically at this point.

Mom called this morning asking in a desperate voice if I could come make her breakfast. I was rushing to get ready for a doctor's appointment, but I dropped in on her for about 10 minutes on my way. She was laying on top of her sheets with eyes and mouth open. At first I thought she wasn't breathing...but she stirred a bit when I walked up to her.

She was dressed, but clothes were strewn about and the remainder of her dinner was on the side table by her chair. It appeared that her dinner had consisted of saltines, a piece of rye toast with butter and jam....and a bowl of potato chips. I cleaned up a bit, then got her some cream of wheat, more toast and coffee.

I went back with more groceries after my appointment. I tried to pick food items at the store that would be easy for her to eat and a little different...four kinds of salad, oranges, cantaloupe, broccoli in cheese sauce, baked beans, and shepard's pie. I made up three individual dinner plates for Mom to eat later.

Mark stopped by while I was rounding up the kitchen garbage; the mound of diapers in the bathroom wastebasket, and all the recycling. He brings her a milkshake almost every day, Monday through Friday. We talked for a bit....he spoke briefly to Mom and then left with all the bags of recycling and garbage. I was glad that he had done that small task, but felt resentful and tired thinking about all the other chores that I have taken on over the last four years of Mom's care. He thanks me for what I do, but never offers to take on more responsibility.

Mom wanted some lunch so I heated up a frozen meal of fish with pasta and vegetables. I did one complete load of laundry and started another one before I left. I helped her change her pants after lunch...she had dropped food in her lap and stained them. Of course, to find the pants she wanted to wear required me to open one of her locked trunks. Luckily I found the right key on her massive ring right away.

Mom thanked me for everything I am doing for her, held my hand, thanked me a million times over again, held my hand some more...it was just so desperate and sad.

I went back later in the afternoon, because I began to worry that she wouldn't be able to dry the blanket or get it back on the bed. When I walked in the blanket was on the floor in a heap by the bed and Mom was asleep. I picked up the blanket and began to put it over her when she woke up.

I asked her if she wanted some dinner and she said she could eat something small. I heated up one of the dinner plates I had made earlier in the afternoon for her. She ate two thirds of it and drank another cup of coffee. I sat with her while she ate and we talked for awhile about her situation. She wants to stay in the apartment because she can afford it. I told her that I was having a harder and harder time taking care of her. I told her that she shouldn't worry about the money....that I would start looking for a place where she could be safe. I told her again that I worried about her safety being alone in her apartment most of the time. She has been at high risk for falling and has fallen several times over the last four years. Now after her hip surgery, she is even more unstable

Mom said that she wants to die....that this cannot last much longer. She talked about her own Mother...how good and kind she was...a lot like me, she said. I teared up a bit and just sat there holding her hand.

Against medical advice

Mom left the rehab center tonight against medical advice. She signed some kind of release and made it out the door. The staff called me to come, but I refused to get caught up in her latest misbehavior. The police arrived and an officer called and tried to guilt trip me into coming down there with her keys. I told him that every medical person I have talked to in the last month, including her Dr. yesterday, told me that she was not ready to go home, would perhaps never be able to live alone again, and should in fact be in assisted living. The officer contended that this was not a police problem and that it in fact was my responsibility as her daughter. I ended the conversation after that jewel of a statement.

I tried calling the crisis clinic to get in contact with the Mental Health Professionals. I got a lot of sympathy and validation, but not much in the way of actual help. I was told that the MHP's, do work 24/7, but that they were not available for this kind of situation.

I had called her apartment manager to let him know that she may be showing up there. She did show up there and apparently told him that the staff at the facility had gotten cab fair together and sent her home. So much for any kind of reasonable discharge plan. It also appears that the staff didn't do any kind of competency testing before they let her walk out the door.

So...here we have a 91 year old woman who no one wants to deal with. She made it home..which has been her goal for a month. The bad news for her is that I cannot help her anymore since she alleged that I threw her down the stairs ...creating the broken hip situation.

I am totally emotionally exhausted with her, her health, her drama, her inability to do anything in a rational manner, and her complete and absolute narcissism. Tonight I am done with her. I have put my cell phone on silent and unplugged all the land lines.

The one good thing I did today was finalize her cremation and burial plans. I go to the bank tomorrow to get the money to pay it off. Perhaps one day she will finally rest in peace.

MHP

Today was the day that I spent some time talking to the MHP (Mental Health Professional) who had interviewed Mom this morning. He came away feeling that putting her in a psychiatric facility would not be the best for her. She admitted to him that I did not push her down any stairs.

She sort of understands that her remarks are going to keep her in the rehab facility until the doctors clear her. He suggested an adult group home, and I told him that would not work with her long standing paranoia and borderline personality traits. It is unclear to me now when I may be dealing with her personality quirks or some mild form of dementia. All I know is sometimes she is very nasty and combative.

I said that I was willing to work through the process with Adult Protective Services and help her get home if she is able to be there. That is kind of doubtful but at least we could have that be her motivating goal.

I talked with Mom tonight..she had been vomiting since breakfast. She sounded weak and really tired. She said she didn't want any dinner...so another day goes by with no food. I am beginning to wonder if something organic is wrong with Mom. It could be the congestive heart failure or it could be something else unrelated. I will see her tomorrow evening to see how she is doing..hopefully she will have eaten something and gotten some fluids in.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage, against the dying of the light.

Dylan Thomas, The Collected Poems of Dylan Thomas 128 (1957).

Simone de Beauvoir, in her treatise on old age called La Veillesee,
concludes that "the manner in which a society behaves with its old
people unequivocally reveals the truth-often carefully masked-of its
principles and its ends.

Simone de Beauvoir, La Veillesse (Old Age)

I am up at 4:00am looking up information on civil commitment laws in Washington State. I woke up and just could not stop worrying about Mom as her situation deteriorates. She could end up being committed to a treatment facility if she keeps going down the path she is on now. The police have been to her rehab facility twice..once when she called and said she was being kept against her will, and once when she tried to escape. She is persistent in her desire to go home, but that is looking more and more unlikely.

All of this just breaks my heart. She is her own worst enemy it seems. I cannot convince her to cooperate with her treatment. Some days she will do her physical therapy and take her medications...other days she will not. When I called last night she was in her room stubbornly refusing to go to dinner. When the nurse told her I was on the phone her only answer was "I will deal with her later". She is in full on combative mode.

I am exhausted both physically and mentally with this situation. I won't be able to protect her anymore or mitigate whatever trouble she gets into now. I have power of attorney, but have limited contact due to the story she told the doctor about me shoving her down the stairs. Stairs that she admitted yesterday she did not even have in her apartment. She just keeps spinning out of control. The further she spins, the less control she has over her situation.

6:52am Sunday

Today the phone rang at 6:52am. It was a staff member from the rehab facility telling me that Mom was trying to escape again. She was pissed because she had a lot of other patients to care for and needed me to come down to help. I explained that I could not be alone with her because of the allegation she made against me.

A second nurse called a few minutes later and told me that the would have to call the police if she kept trying to get out the door. The police finally were called and talked her back into her room somehow.

I dropped off some clean clothes later and got an earful about how she was going to sue her "Jew" doctor. She was upset that I had brought so many clothes. I told her I wasn't going to make a bunch of trips this week just for her clothes.

I left the room so upset that I started to sob in the hallway. The nurse hugged me and then explained that they had called a county Mental Health Professional in to assess Mom's condition. This could lead to civil commitment. All of this just makes me sick to my stomach. There is very little that I can do at this point except watch Mom going into an angry free fall. It is terrible to witness.

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's...so 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

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

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.

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 this...my 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.

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, Dad....my brother, his family...how 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!

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 her.....my 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.

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 lung..so 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.

911

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.

Where we are now

I know it has been a while since I have posted any entries to this blog. Work, helping Mom, our new daughter ...basically life has gotten pretty busy these days.

The short story is that Mom broke her hip last Sunday morning. It took me 2 hours to convince her she needed to go to the hospital. Once I had put some things she wanted into her trunks, she let me call 911. She insisted on putting her lipstick on before the 4 firemen arrived. They cut the right leg of her pants, evaluated her and called a cabulance to transport her to Virginia Mason Hospital.

I followed them to the Emergency Room. They gave her a nerve block, took some x-rays, evaluated her overall health and sent her to the Ortho floor to await surgery. They ended up monitoring her the rest of Sunday and all day Monday to make sure she could handle surgery. They found she has congestive heart failure, some valve blockage, one side of the heart that doesn't move much, and of course, her diabetes.

I finally went with her to the door of the surgical area about 6pm on Monday night. The anesthesiologist called around 7:30pm to let me know that her age and condition made this a high risk procedure. The surgeon called about 10:30pm to let me know it had gone well.

I saw Mom the next day, and she seemed to be doing fairly well. They got her out of bed a little and worked with her on her post operative precautions...no bending down, not pivoting her right foot, no more than a 70% angle. Today she walked with the aid of a walker and a Physical therapist for 100 feet. She amazes everyone with her resilience.

Tomorrow she is being transferred to a rehab facility for up to 20 days to build her strength. I will meet her there and bring more clothes. I will also help ease her into the place, as I know she is extremely nervous about being in this facility. This is where my Dad died in June of 2007. She probably fears the same will happen to her.

It has been an emotionally exhausting week for both of us...but she is still in hanging in there.

Mom's 91st Birthday

Mom with her birthday cake tonight


Mom at the restaurant on Sunday


Pamela and Haven at the restaurant on Sunday

Sunday I took Mom, Pamela and Haven for lunch at a local seafood restaurant. The big hit for Mom was the chocolate sundae at the end of the meal. She seemed to enjoy getting out and spending time with us. She really gets a kick out of Haven and all her little antics.

Today is Mom's 91st birthday. I started her day by calling and singing her "Happy Birthday". Her first words were "I knew you would call". I arranged with her to bring dinner over tonight after work. Fried chicken, mashed potatoes and gravy, cabbage salad, and a chocolate baby cake with a candle.

Mom never talks much while we eat. I think she needs to concentrate. Her hearing is now so bad that it is difficult to communicate with her. We seem to do best over the phone.

After dinner, which was a big hit, I helped Mom get ready for bed. She sat on the bed in her nightgown while I sat with her marveling at her 91st birthday. She said that she hopes there aren't many more. She is having more foot pain with the neuropathy, more trouble with her heart and is just generally getting tired of living.

I did her dishes, took out the garbage and kissed her goodnight. I did what I could to make it a pleasant evening.

Happy Birthday, Mom.

And then she fell

Mom fell on January 10th. I found out when her apartment manager called me at 6:38am to let me know about it. She had called him thinking he was right down the hall. By the time I arrived at 7am I found her propped against the wall next to her apartment door. She had dragged herself across the apartment to remove the security bar she puts on her door every night.

I knew that I could not life her by myself, so I came up with a strategy to get her to move to the bathroom toilet just a few feet away. Once there, I had her grab onto the bathtub handle I had installed. While she was doing that I lifted her to the toilet seat. She sat there for awhile and rested while I figured out what to do next. I finally got her back to her comfortable chair in the living room. I made her some breakfast and got some fresh coffee brewing.

I knew I had to get to work so I called and left a message for my brother to stop by if he had time. I sat at work agonizing over the fragile state Mom was in when I left. I finally made arrangements to take my computer and work from her apartment. While driving there my brother called and said she as fine, that he had prepared some lunch for her and there was no need for me to return. I asked him if she was dressed...meaning out of her nightgown and he said she was dressed. Knowing how little interest my brother has in Mom I thought it best to go spend some time with her.

When I arrived, she was using her walker to move slowly around the apartment. She was still wearing the nightgown I found her in that morning only now it was stained with her lunch. I got her to change nightgowns and had her put her robe on top of it. Next I did her laundry and did the dishes. Sensing that she was pretty scared by her morning I just sat with her and let her tell me exactly what happened in more detail. I finally fixed her dinner and turned down her bed before I left for the day.

She continued to complain of aches and pains over the next week, but that has slowly subsided. Luckily, it doesn't appear that she has broken any bones. Even if she had, she refused to go to the hospital or any doctor for a checkup.

This experience shook her up in a more profound way than any of her other falls. She is getting frailer all the time. I just hope I can be of help when the next incident happens.