On Thanksgiving day Gladys began the last days of her life.  We were only able to wake her up twice during the day.  On Thanksgiving night when Anita and I were getting her ready for bed, Gladys had a moment of clarity.  There was something in her gaze and voice that I had not seen or heard for quite some time.  While Anita and I were putting her in the sling for the Hoyer lift, Gladys looked at me and said, “What happened to me?”  I said “You had a stroke.”  She wanted to know when so I told her five years ago.  She looked at the lift with fear in her eyes and asked what we were doing and I told her that it was the only way we could lift her to change her.

She Was Ready to Go Home

Gladys looked and us and said, “I don’t want to live like this.”  Then she asked Jesus to take her home.  Over the next two days – while asleep – she would call for Lessie (her mother), Margaret (her cousin) and Clifford (her husband).  I called Hospice on Friday and they told me that Gladys was probably in her last days.  After that I began to gather insurance papers and contact information for the crematory that I wanted to use.

On Sunday, the third day, while I was at church, my daughter sent me a text that she couldn’t wake Gladys at all.  I cancelled our Sunday sitter who would normally relieve Anita at 10 AM and went home to care for Gladys myself.  Around 6:30 PM I heard a loud choking cough.  I went downstairs and Gladys had gone; she died peacefully in her sleep.  I called Hospice, they sent a nurse out to pronounce her and call the funeral home.

The Repast

At the end of the week, my oldest daughter, Nichole who took care of Gladys for 2-1/2 years flew in from Philly and we had a private memorial service.  After the service, we went to Roy’s Cheese Steak Restaurant to enjoy Gladys’ favorite meal – cheese steaks and a Coke.

This past Monday our home health aid and the nurse arrived about the same time.  They were surprised that it took both of them to get Gladys out of her chair and stand her up to her walker.  Of course Gladys told the nurse that she felt fine and everything was going well.  They looked at me, surprised at the effort that it took for both of them to help her up.  I just looked at them and said “Welcome to My World.”

More change is in store because my husband, Fred, starts working next week.  It will be an adjustment because he helps me a lot with Gladys.  I have added another day for our sitter, so that will be some relief and allow me to run errands and do other things I need to do.

All we can do is take it one day at a time and do the best we can.  It gets a little frustrating but so far we’re managing.

I was very impressed with one of the sitters, Tami.  I called her on Wednesday, checked her references on Thursday and interviewed her at my home on Saturday.  Fred and I both like her.  I also checked with Stephanie and asked how the private sitter list was comprised.  It turns out that when Stephanie visits her hospice clients, she observes how the caregivers interact with their patients.  If Stephanie is impressed, she adds them to her list.

We Hired Tami

We hired Tami.  Today is the end of her third week with us and so far we are very pleased.  Before we hired Tami, I called both of our daughters and told them about her background and her references.  My oldest daughter Nichole, was concerned that she had only worked for two of the families for 4 months and 8 months.  She wanted to know why “she couldn’t keep a job.”  I told Nichole that her tenure with those families was short because the patients had died.  Nichole was alarmed and said, “You don’t want to hire her, she might kill Aunt Gladys too.”  I told Nichole to relax.  Tami had primarily been a live-in caregiver who cared for terminally ill patients.

We Made An Agreement

An Internet search provided several contract samples.  I used a contract from Agis.com and modified it to suit my needs.  Tami works three days a week.  In addition to routine caregiver duties she coaches Gladys through her physical therapy exercises and when the weather is pleasant, Tami puts Gladys in her wheel chair and walks her around the subdivision.

So far, we are very pleased with Tami.  Gladys is receiving good care and we are comfortable having her in our home.  More Updates later.

Related Posts:  The Ever Changing Life of A Family Caregiver

Taking My Life Back

Before I became a caregiver there were things I used to enjoy that have all but disappeared from my life.  I realized this a few months ago when I went on vacation for the first time since I became Gladys’ caregiver.  My life pretty much revolves around Gladys’ needs and I’ve neglected myself  in many ways.  That’s about to change.

The holidays gave me a chance to jump start some things that I want to bring back into my life.  It’s amazing how little things can provide so much satisfaction.  The following changes are being re-incorporated into my life.

Date Night

I haven’t been married for 38 years by ignoring my husband.  Fridays used to be our date night.  It’s something we started about 20 years ago and kept up until 2008.  While we probably can’t make a weekly date, we can probably work in a date once a month.  I just have to convince my daughter, Anita, to watch Gladys for us while we go out.

Love A Good Book

I love to read.  Give me a good thriller or murder mystery and I’m a happy camper:  Vince Flynn, Michael Connelly, Walter Mosley, JD Robb or Tom Clancy.  Between Thanksgiving and New Years Eve, I read four novels – three JD Robb and one Michael Connelly.  JD Robb is a recent author that I started reading and I’m trying to catch up on the Eve Dallas series.  Fortunately I found a good second hand book store that also takes trade-ins.  I didn’t get much else done, but I was content and eager to get back to my books.

My reading goal is at least one novel per month.

Food Network Anyone?

Until last month, it had been a while since I tried a new recipe.  Over the past month I’ve tried at least six new recipes, including frying a turkey.  I shared my new recipe adventures with my Facebook friends.  It’s funny how so many friends responded to the cholesterol, calorie laden recipes but not a peep when I share the healthy ones.

This goal is to try a new recipe at least twice a month.

Regular Vacations

This year I went on vacation alone and that was a stretch.  Not because I can’t handle being alone (I enjoy alone time), but because my husband is semi retired and has not worked in about two years.  In addition to that, my hours were cut just before Gladys came to stay with us.  However, we’re going to work it out along with care for Gladys while we are gone.

Exercise of Any Kind

Just before Gladys came to live with us I started walking for exercise.  It wasn’t much but it was something.  Over the past year and a half I have become a bonafide couch potato and gained about 10 pounds.  I’ve got to get back to walking.  Also need to incorporate a stretching routine.

I believe all of these are doable.  It’s not really a lot, it just takes some planning and time management.

What About You?

If you are a caregiver who has become stuck in a rut, I hope you will also take a look at some things that you can do to take your life back.

Comments?  Feedback?

Dear NFCA Members and Friends-

Evercare, an NFCA corporate partner, and the National Alliance for Caregiving, are conducting a survey to measure the impact of the economic downtown on caregiving families. If you fit any of the profiles below and would be willing to talk with the media about it please contact:

Sherri Snelling

714-226-2252

sherri.snelling@uhc.com

Are you caring for someone over age 18 who has been adversely affected by the recent economic downturn and is struggling financially to continue to cover caregiving costs.  If yes have you experienced any of the following?

>Family Caregivers who have had a change in their work situation (been laid off, cut back on hours or their spouse has been laid off from work) and the cost of caregiving is an added burden hard to continue

>Family Caregivers who have had to move in with their loved one or their loved one has moved in with them to save costs

>Family Caregivers who have been trying to sell their loved one’s home and cannot in this mortgage crisis

>Family Caregivers who are incurring credit card debt, using savings or just struggling to pay bills because they are also covering caregiving costs

If you are a  family caregivers who fit this description (or know one) and would be interested in being contacted by media, please contact Sherri Snelling (contact info above)  before April 6

###

Family caregivers typically live under tight financial straits. In fact most of the calls we get on the NFCA HELP line are from family caregivers seeking financial assistance. Please contact us and/or Sherri to tell your story. You can also post it in the Story Project section of the website. https://www.thefamilycaregiver.org/connecting_caregivers/share_your_story.cfm?&CFID=9876962&CFTOKEN=25381308 by clicking here or copying it into your browser.

Suzanne Mintz