Hospice care

Mom has been a patient at Burien Nursing and Rehabilitation since March 6th. She had a fall in February that resulted in a hospitalization and another fall at home on March 2nd, the day after her 92nd birthday.

Mom is on hospice care now. She will get some extra support from a hospice nurse, an extra bath a week, pain meds. and a more comfortable mattress as she has back pain. The hospice nurse told me today when I met with her that this is most likely due to pressure from the fluid in her lungs or it could be that the cancer has spread to her spine.

She has a mass in her chest, probably a malignancy that has spread from her breast cancer. Both lungs now have pleural effusions...basically her lungs are filling with fluid from the congestive heart failure.

She will also have a visiting chaplain and hospice volunteers who will check on her.

She sleeps more now and hopefully will just drift off ...for her sake, I hope sooner rather than later.

Monday, March 10, 2008

We managed to get Mom through her 88th birthday on Saturday, March 1, 2008. We took over a bucket of Kentucky Fried Chicken, potatoes, gravy and coleslaw. She was thrilled to be eating fried chicken...something she has not had for several months. Pamela and I decided that this worked so well that we would try and bring her a dinner like this more often. I also gave her a card that she loved and a box of sugar free chocolates.

I flew to San Francisco with a friend the next morning. My brother Mark had agreed to come over early in the week to have lunch with her. I checked in on Mom a couple of times each day while I was gone. I could tell that my physical absence and her long hours alone were taking a toll on Mom. I arrived back in Seattle on Wednesday night, March 5th and was out at Mom's apartment the next afternoon.

She has been talking lately about her wishes after she passes away. She specifically told me yesterday that she does not want a memorial service. She also told me that she didn't think she could possibly last much longer. This morning she told me that Dad was waiting for her. I don't really know if this is a form of grieving or if she has a premonition about her own death. I will just continue to do what I can to make things a little easier for her.

Getting away for a few days was really great...seeing new sights, eating out at good restaurants, seeing the Annie Leibovitz show in San Francisco....all of it helped restore my energy and perspective.

Simple things

Mom was kind of difficult to manage this morning…and I got work a half hour late as a result of going to three stores and the bank. She needed to get new checks..and she thought she had to take Dad’s name off the checks, but it turned out that she did not have to do that. This little thing turned the rest of the morning into a trying experience. She was kind of difficult at Safeway…very impatient having to wait to get by people in the aisles…kind of yelling at me….then she burst into tears at home and was sobbing about missing Dad.

I checked on her twice in the afternoon and we got everything figured out. She felt like she wasn't yelling at me. Seems that she can barely hear me half the time and doesn't know how loud her own voice is projecting. Mom feels that she is a burden. She appreciates all that I do for her. It was alright in the end...she was just having a bad day. Everyone deserves understanding when it comes to having a bad day.

The good news is that I had the initial conversation with her about Arrowhead Gardens and she seemed interested.

http://www.housingseniors.com/arrowhead_gardens.php

I am going to an open house in Lake City at one of their other facilities on Saturday to see the floor plans etc. I found out that Arrowhead opens in August..they are taking deposits now…so I am going to try and move this process forward.

May Day - The final descent

I have a new routine these days.  On Tuesday and Thursday evenings, I go to the Skilled Nursing Center where I admitted Mom on March 6th.  I also see her sometime on Sundays.

Tonight when I arrived I found om in bed refusing to eat dinner.  I went and got my meal in the kitchen and then hooked up her with the earphones I purchased for her.  I sat and ate while she watched the news.  When her nursing assistant arrived with her dinner she again refused it.  I asked the assistant to leave it and said I would try to get her to eat something.

She did take a few sips of coffee, ate two bites of a grilled cheese sandwich that I hand dunked in her tomato soup, and ate a beet.  Her breathing was labored and she was coughing a lot.  I put the head of the bed up for her and helped her with sips of coffee and small bites of food.  She seemed really frail and subdued.

I asked about her latest chest x-ray and found out that she has more fluid in her lungs.  Some days she takes her lasix and some days she refuses.  Today was a refusing day.

lasix (from Websters.com)

noun

commonly used diuretic (trade name Lasix) used to treat hypertension and edema

She also told me that she had called my brother.  Apparently, he used some foul language and she just said "goodbye" and hung up.  She talks him every time I see her.  All she wants is a chance to see him again.  That is not likely to happen.

Mom is making her final descent.  I am there as her daughter, her advocate and her supporter.  It makes me sad to see her dwindle away like this, after all she has lived through in her 92 years.  She is worried about her money and upset that there won't be any left for her children.  I told her we never expected that there would be an inheritance.  I tried to calm her down about the cost of the facility, all the while making out a check for over $4000 for one month.  Soon, she will be out of money.  I have submitted all the Medicaid paperwork and continue to have the facility fax off medical bills as I pay them.

I have built up some resilience over the last four plus years with Mom.  I am glad that she is somewhere safe.  I no longer worry constantly about finding her on the floor or worse.  I am starting my internal process of saying my farewells.

Whenever I leave I comb her hair, stroke her face, give her a kiss and tell her that I love her.   She always says that she loves me so much...that I am so good.  I look in her face and see what I will most likely look like if I live to be 92.  Her skin is soft to the touch.  Her arms are slender and her body is smaller that I have ever known it to be.  This is what my Mom's last days look like...and I am happy to be along side her for this final leg of her journey.

March 2

The phone rang at 11:30pm on March 2nd. Mom had fallen again and needed me to come over.
I threw on some clothes, drove to her house and found her setting up against her bed with a brass lamp laying over her lower legs. She said she had missed the bed when she got up to go to the bathroom. Did she turn a light on? Absolutely not!

I knew immediately that I could not get her back to bed. I called 911 again and they sent a crew over. They helped her up after assessing her, put her back to bed and took her blood pressure. Everything seemed ok, so they left.

I tucked Mom in again, said good night and headed home. I know this cannot keep going on. It is time to admit her to a nursing home for her own safety.

I made a few visits over the weekend and ultimately selected a place in Burien, Washington.

The next Tuesday, March 6th I picked up Mom's favorite breakfast of biscuits and gravy and headed over the her apartment. We had a conversation the day before about it being time for her to be in a safe place. Being alone in her apartment was no longer an option. She seemed to agree and even admitted she was tired of trying to take care of everything.

Mom was pretty low key as we through the admission process and got her settled in her room. Since then, she has acted out about the many minorities on the staff. She has also tried to leave the facility, but at least this one has an alarm system. They have placed an alarm activator on the back of her wheelchair where she cannot get at it. The Physical Therapy staff want me to take her walker away. Her gait is no longer steady enought to be walking on her own with a walker. However, Mom keeps taking it out of her closet and using it. They took it to the gym and she retrieved it again. She just is so stubborn and unwilling to understand her health problems.

She hates being there but I cannot back down this time. She wants me to do her laundry and I refused. I am exhausted with taking care of her as her health has declined. I simply cannot do it anymore.

I gave up her apartment last week. My brother helped me move all the furniture out yesterday. I have odds and ends to take care of there....but slowly things are getting accomplished.

My next task is to fill out the Medicaid paperwork....because Mom clearly does not have enough money to last her.

So..we are here....at the nursing home...Mom's health is deteriorating everyday. She is pissed off and still acting out. Her contrary nature is truly her life force.

Birthday - March 1

Mom has been home from the hospital since February 16th. She has needed a lot more help. She seems unable to make food for herself other than toast and cream of wheat. She still makes and drinks coffee everyday. I have taken over doing the laundry, making her bed, assisting her in the shower...etc.

I wanted to make her birthday fun, so I got her Kentucky Fried Chicken with mashed potatoes, gravy, biscuits and cole slaw. I got enough so that she would have snacks for a couple of days. I also bought her a chocolate bundt cake. I found some candles in her drawer...put four on and lighted them while I sang her "Happy Birthday". I also got her a big box of assorted Russell Stover chocolates. While she didn't make it out of her robe and pajamas on her birthday, she did have a nice dinner, enjoyed the cake and dove into the chocolates.

Falling

Mom fell on February 12th, which was a Sunday. I arrived at my usual time, 8:30am, with bags of groceries. When I opened the door I saw that Mom as laying on her right side in the middle of the living room floor.

After quickly putting down all the bags of groceries, I went and tried to figure out what was going on. She did not answer me when I yelled her name. Her face was kind of puffy and over her eyes she had flaps of skin that were filled with fluid. Eventually, she stirred a little bit. I asked her if she hurt anywhere...and she said "everywhere". Not knowing if she had broken anything, I covered her up with a blanket and called 911.

I went down to the lobby to let them in and tell them what was going on as we rode up the elevator. They went into action and examined her. They did not think she had any broken bones, but they were concerned about whether or not she had had a mild heart attack or some kind of mild seizure. Mom told me that she had tripped on the rug...but she if often not the best source of information when she falls. The decision was made to transport her to Swedish Hospital - the Cherry Hill campus.

After they left, I closed up the apartment and went to my house to get her Health Care Directive, which is basically a "Do No Resusitate" order. When I got to the hospital ER Mom's Doctor was looking for me. It turned out that Mom's blood pressure had plummeted and they did not know if she had a DNR. The had to put the paddles on her to restore her blood pressure. Eventually, after a couple of hours, a CAT scan and some other procedures, Mom was sent to the Cardiac ICU.

She stayed there for a couple of days but would not allow them to put in a PIC line. Her doctor wanted to know what was going on in her heart. Technically, this could be considered a violaton of her DNR, but we let it go once she was transferred to another floor. She stayed there for another couple of days and then despite all that her doctor and the social worker were saying about her needing to be in a skilled nursing facility, I took her home. That is what she wanted ...so that is what I did for her. I honestly did not have the energy to find someplace and then fight her to get there.