A Transition

This is a photo of Mom last Christmas.  So much has changed since then.

We are in a transition with Mom's health.  The congestive heart failure now seems to be causing her health to decline rapidly.  She is weak, does not feel well, has a bad cough, and back pain.

When I arrived at the nursing home on Thursday night Mom had completely lost her voice.  She had a deep cough and was having trouble breathing.  She would not eat her dinner.  She said she did not feel good and just wanted to go to bed.  I had brought her a chocolate milkshake, so she agreed to take a few sips of that, but could not even drink half of it.  Her back was hurting so I got the nurse to give her a Tylenol.

Later in the evening, I had this nagging feeling that I should return to check on her.  She woke up when I arrived and seemed to be coughing and breathing in a labored manner.  The nurse showed up and asked her if she wanted oxygen.  As expected, Mom refused.  She looked at me and said she would be better by morning.  She told me she loved me.  I told her the same...and left feeling overwhelmed and sad.  It is so hard to see someone you love slowing moving in the direction of dying.

I talked with the Hospice folks by phone on Thursday and they agreed to evaluate Mom on Friday during their visit to see someone else.  The hospice nurse and the facility agreed that she would need to go back on hospice care once her doctor writes the order.  She will get visits from a nurse, some volunteers will visit her, she will get an extra bath.  Small comforts....

I visited Friday after work.  Mom was asleep in her room.  I took her to the dining room, but she refused to even consider eating.  I took her back to her room and left her sitting by her bed.  I did not have the energy to get her ready for bed, so I left before she started taking off of clothes.  I told her I would be back sometime Saturday.

I showed up for breakfast on Saturday morning.  Mom was dressed and ready to eat.  She did much better this morning and ate most of her meal.  She wanted to go back to her room afterwards, so I took her there and changed her shirt and sweater.  I hate to see her sitting around in food stained clothes.

I will be there for breakfast tomorrow morning.  I feel I need to keep in close touch.  It feels like her situation is very precarious....and that she could go at any time.  My therapist asked how I feel about all of this.  I feel sad.  Mom is my last close link to Dad.  She and I have been through a lot in the last 58 years.  Not all of it has been great...but she has done her best.  I appreciate that she is a strong character.  I hope she is able to go quietly and peacefully.  She has lost her ability to fight the situation.  Her body is failing but she keeps saying one thing over and over to me:

"I love you so...I love you so...I love you so."   Sometimes she included my Dad and my brother in her litany.  It is heartbreaking.

I always hold her hand and kiss her on her lips or her forehead and tell her that I love her too.

I love you too Mom..with all your contradictions.

A small life

It occurred to me yesterday that Mom has had a small life...a small territory bordered by her anxiety, her paranoia ...her fears.  It breaks my heart to see her now so diminished.  Her world is so small...the nursing home....her room there shared with two others..the dining room.  Sitting in her wheelchair watching the activity around her but barely able to participate. 

Her hearing is now almost gone.  Her appetite is still fairly good even though she complains bitterly that the food is terrible.  Her favorite meal seems to be breakfast.  Lunches and dinners are not that good.  She has gained some weight back, but is upset about it.

I wash some of her sweaters and bras on a regular basis.  I bring her candy or cookies...of pictures of my family.  She cries every time I leave...saying over and over "I love you so".  She wants to come live with us, but we are not set up for someone in a wheelchair.  Everytime I leave, I feel myself gasping for my own inner balance.  Each visit takes a little more out of me.

I promised Dad that I would take care of Mom ....and that is what I am doing.  It has been over 5 years now since his death.  I visit Mom every Tuesday and Thursday evening ....and Sunday morning.  The weeks since she was first admitted go by one after the other.  She has been taken off hospice care...she has improved.  My guess is that she is actually doing better with people around her 24 hours a day looking after her.

This is a long and slow descent.  I am going to need to pace myself because she is not going down easy...despite her wish to die sooner rather than later.

It is a small life...it has always been a small life...I am her witness.

I love you so

I love you so....I love you so....those are the words I hear from Mom every time I got to see her.  We have a schedule - Tuesday and Thursday nights and Sunday morning. 

The evening visits are the same...we eat dinner in the dining room, I take Mom to her room and with the help of a Nurse's Aide she changes her clothes, washes her dentures and goes to the restroom.  We put her into bed, and adjust her curtain so she can see out into the hallway.  I usually put on her headset and hook up her Pocket Talker, so she can hear what I am saying. 

She always bemoans the fact that my brother never comes to see her.  She always says that she hates being in the nursing home.  She says she wants to be with me.  I explain that our house is not set up for someone in a wheel chair.  I also explain that I cannot manage her physically anymore.This upsets her, but is the reality of the situation

I hold her hand and and try and comfort her, but always feel devastated by her situation when I am leaving the facility.  Our visits always end with her saying ...."I love you so, I love you so".  I always answer, "I love you too, Mom...I love you too".

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 to 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 Mom in bed refusing to eat dinner.  I went and got my meal in the kitchen and then hooked her up with the earphones I had 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 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.